Comments Results
Comments for Open Meeting on Public Access - March 20, 2008

As of 04/23/2014 at 06:15:33
Total Comments = 433


Comments for Open Meeting on Public Access - March 20, 2008
Entry Date Last Name First Name Degree Affiliation City State Country Role
03/17/2008 at 03:57:38 PM Russell Brad MS Pediatric Cancer Advocate Simsbury Connecticut US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: I am in full support of the policy to have NIH funded studies freely accessible. However, from the time a study is complete, it may be another 6 months to a year to have the study published. Therefore, waiting another 12 months to make that study freely accessible limits the timeliness of the information, especially for patients diagnosed with diseases where conventional treatment approaches have mixed results.

In its present form, I believe the Policy is somewhat limited in its approach. While access to published studies is very important to many, access to NIH funded study protocols is equally important. Important for two reasons: first, unlike a published study which may detail research conducted as much as two years previously, NIH funded studies currently underway detail cutting edge research. Unfortunately, unless enrolled in the particular study, obtaining a trial protocol is not an easy task.

Second, NIH funded studies typically build off of the published literature and, in doing so the written trial/study protocols provide an excellent summary of the research conducted to date and how the current study will advance the understanding of a treatment process. This is the kind of information extremely important for those seeking potential solutions that support, or go beyond, conventional approaches.

While the NIH ponders the issue of making published studies freely accessible, as an interim measure I suggest the NIH make the study protocols from all NIH funded clinical trials accessible so those in need of alternative solutions will have the ability to obtain this information.

To quote Margret Fuller, “If you have knowledge, let others light their candles at it”. Please, let us light our candles.

03/17/2008 at 03:57:22 PM Courant Paul PhD University of Michigan Ann Arbor MI USA Representative NIH Funding Recipient Organization
Comment Topic: Support for NIH Public Access Policy
Comment: These comments are submitted on behalf of the University of Michigan Library. The University Library strongly supports the "NIH Revised Policy on Enhancing Public Access to Archived Publications Resulting From NIH Funded Research" (the NIH Public Access Policy). The University of Michigan is home to hundreds of researchers who receive funding from the NIH, and the University Library provides many kinds of support to those researchers. We are collaborating with external groups such as the Association for Research Libraries (ARL), and with other departments at the University of Michigan to ensure effective compliance with the revised Public Access Policy.

We at the University of Michigan believe that ARL's comments accurately reflect the beliefs of its membership and the interests of research universities. ARL points out that the U.S. Government funds research with the expectation that new ideas and discoveries from the research will further scientific discovery, stimulate the economy, and improve the lives and welfare of Americans. When American taxpayers are funding research, it makes perfect sense that they should also have free, unfettered access to the fruits of that research. The access required by the revised NIH Public Access Policy will advance science, enhance U.S. competitiveness, and promote the public good, and the University of Michigan Library strongly supports its prompt implementation.

03/17/2008 at 03:56:34 PM Fox Christopher DMD, DMSc International Association for Dental Research Alexandria VA US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Proposed Solution from a Small Professional Society
Comment: The International Association for Dental Research and the American Association for Dental Research are two 501c3 not-for-profit associations who publish the Journal of Dental Research. In the previous comment box we described the potential effects on small professional societies who self-publish. In this comment box, we propose a solution.

To address these concerns, we believe that the NIH should undertake a formal Administrative Procedure Act Rulemaking. A Rulemaking would provide the public and all interested stakeholders with a formal mechanism for comment with adequate lead times and a formal procedure for NIH to address the concerns. All publishers, from the corporate publishing houses to the small professional societies, have questions not addressed in the NIH Frequently Asked Questions section of the NIH Public Access Website. Significant copyright concerns remain. To implement a policy by issuing a Notice just sixteen days after being signed into law, then seeking public input with an open meeting just eighteen days prior to the implementation date (with one week to prepare), will never be used as a case study in effective public policy with open communication from all stakeholders.

Should the NIH undertake a Rulemaking, the final NIH Public Access Policy, taking into serious consideration comments from all stakeholders, would be greatly improved for the betterment of science, clinicians and the public.

03/17/2008 at 03:54:58 PM Ogburn Joyce MSLS, MA University of Utah, University Librarian Salt Lake City UT US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: The University of Utah supports the NIH Public Access Policy. We believe that it is essential to disseminate the results of critical research as widely as possible to spur additional research and innovation, improve treatment of diseases, and increase human understanding, as well as supporting patients and their families in making informed decisions. The NIH Public Access Policy will ensure that NIH funded research results remain broadly available for future use, not just the present, through a publicly supported repository. Having access to its own funded research will improve NIH's accountability and strengthen programs by making it easier to analyze investments in research and corresponding results.

University of Utah researchers publish cutting-edge medical research, much of it funded by NIH. Our research will earn greater returns if it can be read and used by medical practitioners and researchers everywhere. Pubmed Central complements our institutional repository that contains research articles and other sholarly works from many disciplines.

We are actively working on compliance and welcome the opportunity to contribute our research to Pubmed Central. The Eccles Health Sciences Library has established a web site to assist our researchers and the Office of Sponsored Programs is organizing compliance activities.

03/17/2008 at 03:54:52 PM Childs John PhD Optical Society of America Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: PubMed and Open Access
Comment: The Optical Society of America has made major strides forward within the worldwide Open Access movement. Our number-one-ranked Optics Express is one of the two oldest open access journals in the physical sciences. In addition, OSA offers an array of other open access alternatives. We are a “Leading Edge” member of SPARC (the Scholarly Publishing and Academic Resources Coalition), and OSA representatives have spoken on behalf of open access at any array of international conferences.

Even with this unsurpassed record of commitment to open access, we nevertheless rely on our traditional journals to supply core financial support to our many other services to our community, which include significant efforts in science education for K-12 students and outreach to minority programs in science on all grade levels. As important, OSA’s journals offer common ground for our highly unified sector of physics. OSA is small by the standards of the large “general” scientific societies, which makes our journals all the more valuable in sharing research. No other publisher—commercial or nonprofit—is as dedicated to publishing peer-reviewed research in optics, and the loss of any of our journals would damage the free flow of information in one of the oldest branches of physics.

Throughout OSA’s 90-year history, optical scientists have time and again broken new ground by bridging the apparent gap between traditional optics and other scientific fields. Authors in our journals have been responsible for the technology behind lasers, fiber optics, Polaroid photography, and an array of other breakthroughs with impact throughout the physical sciences. Most recently, we have allied ourselves with well-respected scientists in biomedicine to explore the many ways that optics can offer significant advances in medical imaging. Our efforts in consolidating research in fields like biomedical optics need careful nurturing.

We are not certain that NIH has fully weighed the repercussions of mandated open access within small, highly respected scientific societies. We’re aware that our “big sisters” in physics and chemistry have clearly voiced their concerns in this matter. Yet as we hope we have made clear above, societies like OSA operate at even less margin than organizations that are household names. Our delicate margin and promising alliances for cross-disciplinary research may be impaired by NIH’s recent open access policy.

We would very much like to state our case more fully as part of NIH’s decision-making policy. We agree with AIP, APS and others that a more “open access” rulemaking process would be helpful to all concerned—public, government, and scientific societies. We at OSA support more freely available research in our field, but we feel, along with AIP and APS, that scientists and the public would be better served by a process developed jointly by NIH and scientific society publishers.

03/17/2008 at 03:51:42 PM Fox Christopher DMD, DMSc International Association for Dental Research Alexandria VA US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Effect on Small Professional Societies Who Self-publish
Comment: The International Association for Dental Research and the American Association for Dental Research are two 501c3 not-for-profit associations who publish the Journal of Dental Research, the number one dental publication in terms of Scientific Impact Factor. While an international publication, most years about 30% of our published articles have some National Institutes of Health (NIH) funding, although it has been as high as 57%.

The Journal of Dental Research supports the DC Principles of Open Access, and content is free of access controls, no matter the funding source, 12 months after publication. We have digitized our entire Journal content back to volume 1, issue 1, published in March of 1919. Scientists, dental practitioners, students, and the public can access all of our content from March 1919 to March 2007. The Journal of Dental Research complies with the current voluntary NIH public access policy and even submits to PubMed Central (PMC) accepted manuscripts on behalf of NIH-funded authors, with an embargo period of 12 months from publication.

While we support Open Access, we strongly object to the NIH’s interpretation and planned implementation of the mandatory language contained in Division G, Title II, Section 218 of the Consolidated Appropriations Act, 2008. Specifically and most importantly, we do not believe that NIH has adequately addressed Congress’ proviso that “the NIH shall implement the public access policy in a manner consistent with copyright law.”

For a small professional association, we have invested significant resources to establish an effective peer-review system, to develop in-house copyediting and production systems, to launch our Journal online in 2002, and to digitize all of our volumes back to 1919. The only way for the Associations to recoup this investment – not make a profit, just recoup our investment – is to retain the copyrighted material and to offer individual and institutional subscriptions. Once a significant proportion of our “copyrighted” Journal content – in the form of accepted manuscripts – is available free on PMC and then onto PMC-International – we forecast a decline in our subscriptions, which will undermine and threaten the sustained viability of the number one journal in the dental sciences.

Furthermore, the IADR and AADR, as publishers of the Journal of Dental Research, are willing to provide PMC with a link to the final authoritative version of the published article, with the same embargo period. As you may know, significant value is added by publishers in the copyediting process. Yet, the proposed implementation of the public access policy would retain the earlier non-authoritative version of the accepted manuscript on the PMC site. Surely, the interest of the public is better served by having access to the final authoritative publication rather than to an unedited manuscript.

Due to space limitations, we will propose a solution in the next comment window.

03/17/2008 at 03:51:30 PM Lougee Wendy MLS University of Minnesota Libraries Minneapolis MN US Representative NIH Funding Recipient Organization
Comment Topic: Support for NIH Policy
Comment: The University of Minnesota Libraries and the Office of Vice President for Research write to support the efforts that NIH is taking to ensure an effective implementation of the updated Public Access Policy (NOT-OD-08-033). We believe that this policy will speed the pace of discovery by expanding access to research findings supported with federal tax dollars in order to better advance science and improve health.

The NIH public access policy directs welcomed attention to the issue of authors rights. Our University encourages faculty and students to exercise their interests in ownership and use of their copyrighted works in a manner that provides the greatest possible scholarly and public access to their work. We have worked over the past year on a number of initiatives to support this goal including conducting an educational campaign on authors rights http://www.lib.umn.edu/scholcom/au-rights.phtml. The University of Minnesota, as a member of the Committee on Institutional Cooperation (Big 10 schools plus Chicago) has endorsed an “addendum to publication agreements” for faculty to use with their publishers to retain rights for use of their work in their teaching, for posting on their personal websites, or depositing to institutional or subject repositories, such as PubMed Central.

At the University of Minnesota, the University Libraries have partnered with the Office of the Vice President for Research to implement the policy by April 7, 2008. We have created a website to centralize all information and institutional advisories about the policy http://www.lib.umn.edu/scholcom/NIHaccess.phtml; met with faculty and administrative committees to discuss the policy and plan its implementation; prepared to assist authors with the submission process; developed plans to provide effective notice to Principal Investigators about their responsibilities; drafted a letter to publishers from the Vice President for Research for use by authors in the first submission of a manuscript that informs publishers of University of Minnesota intent to comply with the NIH policy and requests their support in permitting deposit of manuscripts; and, finally, we have shared best practice experiences with colleagues at other institutions.

We urge the NIH to work with all stakeholders to reduce the administrative burden of compliance on institutions and authors, and to streamline the process wherever possible. Work to influence additional publishers to participate as “fully compliant” partners. Consider providing a master list of journals and their policies to guide author choice, and incorporate those lists into the NIH submission system.

Thank you for your efforts to ensure a smooth implementation of the Public Access Policy. We think the policy will result in a significant improvement in access to health information that will benefit both our university and the publics it serves.

03/17/2008 at 03:50:44 PM Olsen Ben BA patient Centennial CO US Other Member of the Public
Comment Topic: Free public access government funded medical reports
Comment: Please give us FREE ACCESS to published results of government funded cancer studies....It will eliminate the current time-consuming need to drive to the nearest medical library and search the journals, and enable us to make better decisions as to diagnosis and treatment options. Thank you, Ben Olsen

03/17/2008 at 03:48:28 PM Dylla H. Frederick PhD American Institute of Physics College Park MD US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Economic and legal consequences of the public access policy
Comment: Although the intent of public access policy is laudable, the issues underlying the implementation of this policy are economic and legal. Who pays for the value added after an author submits his/her manuscript to a publisher or institutional online platform? Should institutional platforms--like PMC--be using government funds to reproduce what is already effectively supplied by the private sector? Publishers (both for-profit and nonprofit)invest considerable resources in the editorial and production processes that underly high quality journals. They result in high quality articles that have been peer reviewed, copyedited, and properly referenced to the world’s scientific literature. The articles are then made available in online versions on highly reliable, digital platforms with evolving features. They are also published and distributed in print versions – the only form accepted by some archivists and librarians as archival. Publishers provide this added value to the submitted manuscripts and are compensated for this service under several business models. The models typically involve the reader paying (through institutional or individual subscriptions) or the author paying (by open access fees or page charges) or a combination of these. If the NIH public access policy is implemented without real engagement of the publishing community, the viability of the journal publishing enterprise—a significant asset to the scientific community and valuable means of distribution to the international scientific community—could be adversely affected. A critical concern is the value of copyright. NIH has put the onus of respecting the copyright onto the author. But publishers are willing to provide to authors and the NIH simple and streamlined methods of depositing the final, as-published versions of their manuscripts into PMC. In return, they ask that proper links to the publisher’s version should be included in PMC. We also ask that NIH makes it clear that payment of open access fees by authors are not only an allowable grant expense, but that funds are specifically provided for such publication. NIH is exceeding its legal mandate by distributing copies of the PMC version to websites hosted outside the U.S. and licensing re-use of the submitted materials by third parties. By authorizing the hosting of the PMC database outside of the U.S. and permitting third parties to obtain copies of the PMC database, NIH has greatly exceeded the provisions of the legislation. The emotional genesis of the NIH public access policy is well known: the discontent of NIH and institutional libraries with certain high-cost, biomedical journals. It is important that the well-recognized benefits of the majority of journals should not be jeopardized because of the discontent with a segment of high-priced medical journals.

03/17/2008 at 03:47:53 PM Diamond Jane MPH American College of Rheumatology Atlanta GA US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Deposition of articles before errors in data have been corrected; procedure;
Comment: Thank you for the opportunity to comment. The American College of Rheumatology publishes two monthly peer-reviewed journals. The College has several concerns about the new policy, related to deposition of articles before they have been vetted by the copyeditors, the procedure for holding articles, and when the clock starts running. While peer reviewers vet the scientific merit of journal articles, they do not identify every subtle error in the data. This is done at the copyediting stage, after articles are accepted. In virtually every article in our journals, such errors are identified by the copyeditors. Frequently, the errors appear in the Results section and, if not corrected, may lead to misinterpretation of some of the study findings. The copyeditors identify errors by spotting inconsistencies in data presented in one part of an article versus another and rectify them with the author prior to the article’s publication. Such errors occur in articles accepted by all journals, even those authored by the most seasoned and respected investigators. NIH is now requiring that articles be deposited in PubMed Central immediately upon acceptance, i.e., prior to correction of errors in data. The ACR is pleased that although the policy requires that an article be deposited at this stage, the author may stipulate that it not be made open-access until a year after publication, at which time the article initially deposited will be replaced by the published version. The ACR already allows open access to every article in its journals one year after publication. Many other journals follow this same policy. Given the new policy requiring deposition of NIH-funded articles in PubMed Central upon acceptance, there are some procedural issues that seem unclear at this time: • Who will have access to the article in the uncopyedited form? If no one, why does NIH need it to be deposited in this form? • What will be the mechanism by which the author can direct NIH to make only the final published version available for open access? • How will the NIH know the final month of publication when the month is not always established upon acceptance to a journal? Journals add considerable value to published papers by performing peer review; over 98% of papers eventually published undergo revision to improve the validity of the published product, benefiting future researchers as well as patients. The expense and effort of this process is supported entirely by the journals and not by NIH. Many investigators do not seem to be aware of this new policy, despite the fact that NIH plans to put it into effect April 7. Does NIH have a process to handle the questions that will arise from authors and journals? What will the repercussions be for investigators and journals who do not follow the process? The ACR urges NIH to delay this deadline so that authors and publications can adequately prepare for the deadline and these procedural questions may be adequately addressed.

03/17/2008 at 03:46:21 PM Stoddart Joan MALS University of Utah Salt Lake City UT US NIH-funded Investigator
Comment Topic: Happy to Comply
Comment: I am pleased that the NIH submission mandate has finally become reality. As a librarian, PI of NIH funded contract and as a member of the public I fully support open access to NIH funded research. Our library can only afford a fraction of the journals we need and we are supposed to support clinical, educational and research needs in the entire state. Thank you for your efforts in this regard.

03/17/2008 at 03:35:55 PM Todaro Julie D.L.S. Association of College and Research Libraries Chicago IL US Other
Comment Topic: Support for NIH Public Access Policy
Comment: The Association of College and Research Libraries (ACRL), a division of the American Library Association (ALA), represents more than 13,000 academic and research librarians and interested individuals. ACRL has long supported the National Institutes of Health’s Public Access Policy, believing that ensuring public access to the fruits of publicly-funded research is a logical, feasible, and widely beneficial goal. Given increasing evidence that the cost of validating, packaging, and disseminating research results can be met through a variety of business models that complement public access, it is clear to ACRL that the NIH Policy will provide a public benefit and accelerate the advancement of knowledge. It is entirely in keeping with the missions of colleges and universities and their libraries.

We are pleased that legislation was passed to make this policy mandatory. To help our members and their institutions with implementing the NIH Policy, ACRL is providing education, networking, and tools around the NIH Public Access Policy itself and the related issue of maximizing the use and impact of research and scholarship. For example:

1. Convening a live chat in late March so librarians can discuss how institutions are implementing the NIH Public Access Policy and how libraries could leverage this opportunity on campus. 2. Developed a short video, together with the Association of Research Libraries (ARL) and the Scholarly Publishing and Academic Resources Coalition (SPARC), to help librarians effectively engage disciplinary faculty and researchers on maximizing the use and impact of their scholarship. 3. Presented special joint one hour Webcasts for librarians, together with ARL and SPARC, called “Understanding Author Rights.” 4. Co-sponsoring with SPARC a regular twice yearly forum at the meetings of the ALA with topics including federal policy for public access and author control of copyrights. 5. Publishing a regular column in College and Research Libraries News on topics related to the changing system of scholarly communication, including federal policy and copyright.

In summary, ACRL applauds the NIH on the Public Access Policy and is taking steps to support our members as they work within their institutions to implement this policy effectively.

Sincerely, Julie B. Todaro President, ACRL

03/17/2008 at 03:34:41 PM Eaton Nancy L. M.L.S. The Pennsylvania State University University Park PA US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access
Comment: Submitted jointly by the Dean of University Libraries and Scholarly Communications and the Vice President for Research on behalf of Penn State, we write in strong support of the new NIH public access requirement. We believe that this provision will assist in the dissemination of research and will aide in the creation of new research. At Penn State, the responsibility for submission will remain with the PI, though we are actively preparing PI's and faculty to be ready to comply via publicity, an information website, training, and a copyright release addendum.

03/17/2008 at 03:33:53 PM English Dr. Ray PhD Chair, SPARC Steering Committee, Azariah Smith Root Director of Libraries, Oberlin College Oberlin OH US Representative NIH Funding Recipient Organization
Comment Topic: SPARC continues to support the timely implementation of the NIH mandate [part 2]
Comment: Many SPARC institutions have also been actively working to build awareness of the policy and its requirements, and to create mechanisms to smooth the compliance process. Member campus libraries have established online resources with up-to-date information and guidance on compliance; a number of campuses have convened meetings to provide researchers with further support; and some campuses have used e-mail, newsletters, and online grants management systems to ensure that researchers know about the policy and its requirements in a timely manner.

Many SPARC members have established robust author rights management campaigns. These are now being deployed to specifically address questions related to the NIH policy and how authors may comply. Many universities are also providing explicit language to their authors to ensure proper copyright compliance. (See: http://www.mclibrary.duke.edu/nihpolicy for just one of many examples.)

While these libraries are playing central roles in facilitating communication and compliance programs, they are by no means acting alone. On many campuses, these efforts have involved close collaboration among librarians, researchers, research administrators, and university counsel. SPARC’s members view the NIH policy as a welcome opportunity to work in concert with their campus colleagues and contribute directly to the mission of the institution – to promote and advance knowledge.

SPARC commends the National Institutes of Health for issuing implementation guidelines in a timely manner and for being consistently responsive to queries about the process from our member organizations.

SPARC applauds the National Institutes of Health for advancing this important policy, which will provide a rich and innovative suite of new resources – as well as access to critical biomedical research findings – to researchers on our campuses and beyond. Prompt implementation of this policy will accelerate the pace of research and discovery, fuel innovation, and serve the public good.

SPARC looks forward to continuing to work with both its member libraries and the broader American academic community to ensure the policy’s success.

[Part 2 of 2]

03/17/2008 at 03:33:12 PM Mortali Jill   Harvard Medical School Boston MA US Representative NIH Funding Recipient Organization
Comment Topic: authorship
Comment: 1. What about situations where we are junior authors on papers in which the senior author is not a Harvard faculty member?

2.What do I do about publishers that charge authors to make NIH funded manuscripts publicly accessible via PubMedCentral? 3. What do I do about the considerable staff time required to upload my publications to PubMedCentral? 4. Why does the list of journals which automatically upload to PubMedCentral not include many of the journals (Health Care Policy) that faculty members routinely submit to?

03/17/2008 at 03:32:47 PM English Dr. Ray PhD Chair, SPARC Steering Committee, Azariah Smith Root Director of Libraries, Oberlin College Oberlin OH US Representative NIH Funding Recipient Organization
Comment Topic: SPARC continues to support the timely implementation of the NIH mandate
Comment: SPARC (the Scholarly Publishing and Academic Resources Coalition) is very pleased that the revised National Institutes of Health (NIH) Public Access Policy is moving toward timely implementation. We strongly believe that effective, immediate implementation of this policy will greatly improve the ability of researchers to access, share, and use the results of the critical biomedical research funded by your agency.

As an organization of more than 220 academic and research libraries on campuses across the U.S., SPARC and its members are committed to the promotion of programs and policies that expand the dissemination of research results, reduce barriers to the use of those results, and leverage the networked digital environment in an efficient, cost-effective manner. We believe that the NIH Public Access Policy provides an important opportunity to further these aims. It is a major development that enhances our member institutions’ ability to fulfill their commitment to the advancement of scientific knowledge.

SPARC has been strongly supportive of this policy since it was first proposed in 2004 and, along with many of our institutional members, has created several programs to help to pave the way for the smooth implementation of the revised policy. The variety of educational initiatives and practical tools we have prepared are specifically designed to help the higher education community leverage this groundbreaking new opportunity. For example:

SPARC has deployed a comprehensive educational initiative to inform authors of their rights and responsibilities as copyright holders. This campaign emphasizes that authors must be aware of the rights they need to retain in order to comply with the NIH Public Access Policy, and features the SPARC Author Addendum as one tool authors may deploy to ensure they have retained the rights they need. (See http://www.arl.org/sparc/author for details.)

Recently, SPARC (along with the Association of Research Libraries and Science Commons) also published a white paper outlining six alternative copyright management strategies that campuses may consider adopting to guarantee that the institution and its researchers meet the policy’s requirement for compliance with current copyright law. (See http://www.arl.org/sparc/advocacy/nih/copyright.html.)

Author rights, copyright policies, and the NIH policy are the focus of SPARC’s recent and ongoing campus presentations, Web casts, and meetings with university administrators – including vice provosts for research.

[Part 1 of 2]

03/17/2008 at 03:31:06 PM Adler Prudence M.A., M.L.S. Association of Research Libraries Washington District of Columbia USA Other
Comment Topic: NIH Public Access Policy
Comment: These comments are submitted on behalf of the Association of Research Libraries (ARL). ARL strongly supports the "NIH Revised Policy on Enhancing Public Access to Archived Publications Resulting From NIH Funded Research." ARL members include many university libraries that support researchers on campuses who receive NIH funding. As a consequence, many ARL libraries are collaborating with others within their institution to ensure effective compliance with the revised Public Access Policy.

The U.S. Government funds research with the expectation that new ideas and discoveries from the research will further scientific discovery, stimulate the economy, and improve the lives and welfare of Americans. These strategies, such as the revised NIH Public Access Policy, advance science, enhance U.S. competitiveness, improve access to the fruits of our collective investment, and provide better accountability of our Nation's research investments. For these reasons, ARL is a strong supporter of the NIH Public Access Policy. NIH is to be commended for engaging the research, education, scholarly publishing, and biomedical communities in designing,refining, and implementing this important policy. ARL's complete filing is available at PublicAccessComments@NIH.gov.

03/17/2008 at 03:29:16 PM Banik Naren PhD Medical University of South Carolina Charleston SC US NIH-funded Investigator
Comment Topic: Comments on Implementation of the NIH Public Access Policy
Comment: 1. Mark some applications “not recommended for resubmission.” The researcher does not agree with this recommendation because it would allow for novel applications to be rejected if they did not follow common beliefs concerning certain topics. While the Pioneer Award is aimed at recognizing higher-risk proposals, the researcher feels that grants could be rejected if they explored ideas that were out of the realm of current perceptions about disease/injury states or because the idea was tested without success in other models.

2. Amend applications considered as “new” – omitting rebuttals of criticism. The reviewer supports this recommendation.

3. Rate all applications by specific criteria and rank to reduce ambiguity. The reviewer supports this recommendation.

4. Shorter applications with focus on impact and innovation, less on methods and preliminary results. The reviewer supports the recommendation that less focus should be on methods that are standard in research and can be referenced in published literature. However, novel methods and altered disease models should be discussed if the information necessary to conduct the experiments is not available in published literature. The researcher also feels that focus should be kept on preliminary data that begins to support a hypothesis. However, large sample sizes and statistically significant data may not be necessary for all data presented. Also, addressing each specific aim in preliminary data should not be a requirement since many subsequent experimental designs may depend on the results from the previous specific aims.

5. Require at least 20% of effort to go to grant, to limit investigators with multiple grants. The reviewer supports this recommendation.

6. Consider separate review for new investigators. The reviewer supports this recommendation and would like to suggest that R21 grant proposals also be reviewed in separate study sections since the current protocol lumps R21 grants and R01 grants together in a single review process, which inadvertently creates a situation where the R21 is being compared to R01 grants.

03/17/2008 at 03:26:53 PM Dylla H. Frederick PhD American Institute of Physics College Park MD US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: American Institute of Physics (AIP) and NIH public access policy
Comment: AIP, an umbrella organization for 10 physics-related societies representing 130,000 scientists and engineers and a nonprofit publisher of physics journals, is concerned with government-mandated public access as a member of the publishing community. AIP is already fully compliant with the NIH’s currently promoted public access policy, allowing authors to deposit their articles to PMC with full authorization to make the articles publicly available after a twelve-month waiting period. Authors may also choose to publish their articles before the 12 month period has expired by paying AIP’s open access fee. AIP is even prepared to make the deposit to NIH on behalf of the author, thereby ensuring that the record of science is not distorted by having multiple versions of the final, published article. It might seem, then, that AIP sees no problems with NIH’s implementation of public access policy. However, we question both NIH’s previous implementation under voluntary provisions and the mandatory policy taking effect in April. The previous voluntary policy 2005 failed, in part, because there was no significant engagement between NIH and publishers of scientific journals to either optimize the implementation of the policy or to examine the unintended consequences of the policy. To avoid a similar failed implementation this time, the NIH should be required to follow the full rulemaking process that the federal government has put in place prior to implementing new rules that have significant impact on the private sector: Without careful review, comment, negotiation, and implementation of NIH’s public access policy, some well-established and respected scientific journals could be forced out of business. Presumably, this is not NIH’s objective. Journals provide a coherent platform for packaging scientific information in particular fields or subfields that can be accessed by institutional platforms or search services. But these latter services that are keyed to accessing single articles do not supplant the entire value of a journal. A journal and its historical back-file provide a complete record of a discipline promoted by the journal editorial staff. This archival record packages article selection, quality enforced by peer review, added features such as editorial introductions, comments, reviews, and special features such as review and tutorial articles. Publishers make substantial investments to produce such journals and maintain the full, enriched archive. Journals that are published by or on behalf of non-profit professional organizations also provide essential income for scientific outreach services such as translating professional articles to lay language for the popular press. An unintended consequence of poor implementation of the mandate would be to jeopardize the viability of scientific journals, which have maintained their value to the scientific community from their inception three centuries ago through their present online incarnations.

03/17/2008 at 03:25:04 PM Strong Gary   UCLA University Librarian Los Angeles CA US Representative NIH Funding Recipient Organization
Comment Topic: Support for policy from major academic library
Comment: On behalf of the UCLA Library, one of the top ten research libraries in the U.S., I write in support of the NIH open-access policy, which will make peer-reviewed, published research funded by the NIH freely available to the public through PubMed within twelve months of its publication date.

The policy supports the mission of the UCLA Library in many ways. It provides broader access to and dissemination and preservation of scholarly research, both that conducted at UCLA and elsewhere. This enhances the free flow of information, which has untold benefits such as stimulating further ground-breaking research and giving the public access to articles about research and treatment options that may save lives. It respects the important role played by peer-reviewed journals, while at the same time making research conducted at UCLA – a public university supported by both U.S. and California tax dollars – freely available to the public whose tax dollars pay for that research.

I strongly encourage you to keep the policy as it is currently written. It clearly supports Article I of the U.S. Constitution – "The Congress shall have Power…To promote the Progress of Science and the useful Arts..." – which established the purpose of copyright under U.S. law as to promote learning and the creation of knowledge. Thank you for your consideration.

03/17/2008 at 03:13:45 PM samuels barb   Cancer Patient jackson nj US Other Member of the Public
Comment Topic: Rto know
Comment: II feel to to our benefit to have the information available on a free basis to the public. Knowledge is power and the physicians etc can hellp interpret if necessary.

03/17/2008 at 03:03:15 PM Hoffman Maggie   Project DOCC - Delivery of Chronic Care Great Neck NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: Public Access to publicly-funded research findings, articles, summaries, and analyses is critically important. Just as critical is the timeliness of access. Individuals, their doctors, and their family members depend on evidence-based clinical medicine as well as indicators from bench research Advocacy organizations work in partnership with medical providers to refine treatment and research guidelines that in turn are disseminated to individuals and their local physicians; they deserve complete information in a timely manner. There should be no more than a six month lag between journal publication and public access.

03/17/2008 at 03:00:04 PM burke april J.D. Association of Independent Research Institutes Washington D.C. US Representative NIH Funding Recipient Organization
Comment Topic: Implementation of Public Access Policy
Comment: The Association of Independent Research Institutes (AIRI) is a nationwide association of nearly 90 non-profit independent research institutes that conduct peer-reviewed basic, translational, and applied research in the biomedical and behavioral sciences. As recipients of approximately 11 percent of NIH extramural research grant funding, AIRI is pleased to offer comments concerning implementation of the NIH Revised Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research, which was mandated by Congress in the FY 2008 Consolidated Appropriations Act.

Non-profit independent research institutes are stand-alone academic-style centers that offer scientists a focused research environment to conduct innovative science. Therefore, despite the fact that AIRI member researchers may not have an institutional repository to assist authors with depositing their manuscripts into PubMed Central, we stand ready, willing and able to comply with the requirement. Our Board has not expressed any concerns with this policy and actually believes that this requirement may enhance overall support for science once the public is able to view first hand the benefits that result from federally funded research.

AIRI applauds NIH for undertaking the effort to implement the intent of Congress, and we believe the requirements are clear, easy to follow and do not constitute an excessive burden on our researchers or research institutes. We also enthusiastically support making our research available to all who can benefit from it.

We thank you for the opportunity to express our views. We hope that you will continue to look upon AIRI as a resource on this and other issues. Should you require additional information, please do not hesitate to contact me at (405) 271-7410 (Chip-Morgan@omrf.ouhsc.edu) or Jon Retzlaff in the AIRI Washington office at (202) 289-7475 (jretzlaff@lewis-burke.com).

03/17/2008 at 02:51:43 PM Giesecke Joan D.P.A. University of Nebraska-Lincoln Lincoln NE US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy Obligations
Comment: The University Libraries at the University of Nebraska-Lincoln, working with the Office of Research, UNL are very supportive of the NIH public access requirment. The University Libraries have established a system with the Director of Research Compliance using the university grant management system, and the university institutional repository system to assist researchers, and ensure that publications based on NIH funded projects will be deposited easily in PubMed. The reporting requirement is not a burden to the faculty, will ensure that results of funded research are available world wide, and will ultimately improve human health. Using the already established onine systems at UNL, faculty have easy access to the information they need to submit manuscripts to journals, to ensure copyright is handled properly, and for the Libraries to assist with the deposit of accepted manuscripts into PubMed and also into our institutional repository.

03/17/2008 at 02:51:38 PM Ferullo Donna MLS, JD Purdue University West Lafayette IN US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy Support
Comment: At Purdue University, we strongly believe in and support the concept of the NIH Public Access policy. The Libraries, the Office of the Vice President for Research, and the University Copyright Office are collaborating on structuring the implementation of the new policy. To date, notification of the policy and timelines is being sent to all faculty who have NIH funding: information on the process has been posted to the Purdue University Scholarly Communication web site; and informational sessions for faculty have been arranged in the coming weeks. There are some concerns that contracts between publisher and author might not, at least initially , fully integrate the language necessary to deposit the work with PMC. We also anticipate that as with any new policy more questions will arise as will suggestions for changes and improvements once the system is fully in place and has been operational for a period of time.

03/17/2008 at 02:47:50 PM Persily; Karen Butter Gail MLIS University of California San Francisco, Library San Francisco CA US Representative NIH Funding Recipient Organization
Comment Topic: NIH Mandate
Comment: These comments are submitted on behalf of the Library of the University of California San Francisco (UCSF). UCSF ranks among the top 10 NIH-funded institutions in the country with a strong mission of advancing health worldwide. We applaud the new NIH Public Access Policy and believe it will make a tremendous contribution to the advancement of science by leveraging the public investment in NIH to improve public health and providing new resources for scientists to use in new and innovative ways.

At the UCSF Library, we have been engaged in efforts to educate our researchers about options for increasing access to their scholarly work through publication in open access journals and managing their copyrights to enable self-archiving in PubMed Central and the UC repository, eScholarship. For the past several years, many of our faculty have taken an interest in the issues of scientific publishing.

At UCSF, we have been able to build upon existing initiatives in the area of scholarly communication in order to assist our campus with responding to the new NIH policy. We have coordinated communication with the campus office of contracts and grants to notify our researchers about the policy. The Library put up an informational website and questions regarding copyright compliance are being directed to our staff.

Members of our faculty senate committees have identified an interest in understanding the copyright policies of the top journals where our researchers publish. We are in the process of developing a list of journals and determining their policies. The list of PMC participating journals provided by NIH is extremely helpful. However, faculty also want an easy way to know about the other publishers who will submit to PMC on behalf of authors.

At the University of California, a letter signed by the Executive Director, Office of Technology Transfer and Research Administration, University of California, Office of the President is being sent to publishers notifying them that UC faculty will be posting their articles to PubMed Central. We are instructing investigators to enclose this letter with any articles submitted to publishers for possible publication or to append it to any copyright agreement with publishers. This letter significantly facilitates the process of compliance for our researchers. Our researchers are expected to handle their compliance with the mandate using their own staff and resources.

The Library would also like to commend NIH for developing thorough and useful instructions and training materials. In particular, the slide presentations explaining the policy are very useful, as well as the tutorials that explain how to use the manuscript submissions system. As UCSF researchers begin the process of complying with the mandate, we will gain more knowledge about the effectiveness of the FAQ and other help materials provided by NIH. We will forward any comments for improvements at that time.

03/17/2008 at 02:46:44 PM Stoltz Melissa BA Public/Parent of child with cancer Kingwood TX US Other Member of the Public
Comment Topic: Public access to articles resulting from NIH-funded research
Comment:  As a parent of a child with cancer as well as someone who struggles with my own medical issues, current knowledge on treatment, outcomes, etc. is *extremely* important in order to make informed decisions about treatment and clarify knowledge about the health issues in question. Being able to read about the research provides me with a better picture of available treatment or of ways of handling the various effects, allowing me to ask more specific questions and make decisions based on wider knowledge. The information/questions I ask can and has resulted in better treatment and support for my daughter.

The current practice of requiring a subscription or charging a fee for each article quickly goes beyond my ability to pay.

03/17/2008 at 02:36:09 PM Keener Molly MLIS Wake Forest University Health Sciences Winston-Salem NC US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: On behalf of the Wake Forest University Scholarly Communications Committee, I am writing to voice our strong support for the full and timely implementation of the revised NIH Public Access Policy. Anticipating that the voluntary policy would eventually be strengthened to a mandate, in mid-2007 the WFU Libraries created a cross-campus, University-wide committee of librarians and faculty to address scholarly communications issues at Wake Forest, and begin laying the foundation for successful support of the NIH Public Access Policy.

In preparation for the April 7 and May 25 implementation dates, the Libraries have been working with the Office of Research (WFU Health Sciences, Bowman Gray Campus) and Office of Research and Sponsored Programs (WFU, Reynolda Campus) to educate faculty researchers and research administration staff on the steps necessary to ensure compliance, specifically advocating the joint use of cover letters and copyright contract addenda to retain rights necessary for compliance. The Coy C. Carpenter Medical Library has featured articles and announcements about the policy in its quarterly newsletter and weblog, will offer scheduled classes on the policy throughout the spring and summer, and maintains a resources webpage on the NIH Public Access Policy (http://www.wfubmc.edu/library/nih). The Z. Smith Reynolds Library recently hosted a scholarly communications workshop, organized by the Committee, for staff from all three WFU Libraries to provide education on scholarly communications issues and author rights management, and to discuss strategies being developed by the Committee to address issues important to the University community, of which the NIH Public Access Policy is a key priority.

As an institution that last year received 53% of all extramural research funding from the NIH, and with a Health Sciences division that received close to 70% of its total funding from the NIH during the past five fiscal years, we are dedicated to ensuring successful compliance by all WFU investigators as a means of guaranteeing that the vital research being conducted by our scholars continues unimpeded and is disseminated as broadly as possible.

Molly Keener, Chair - Scholarly Communications Committee, Wake Forest University

03/17/2008 at 02:35:46 PM Wolpert Ann   Massachusetts Institute of Technology (MIT) Cambridge MA US Representative NIH Funding Recipient Organization
Comment Topic: MIT comment on implementation of the new NIH Public Access Policy PART ONE
Comment: MIT is pleased to have the opportunity to comment on the 2008 NIH Public Access Policy, as this policy manifests one of MIT’s most deeply held values and primary commitments – making research as widely available as possible. More open access to research directly supports MIT’s mission to “generate, disseminate, and preserve knowledge, and to work with others to bring this knowledge to bear on the world's great challenges.” MIT’s longstanding commitment to the principle underlying the Public Access policy is expressed in its open access innovations: the widely adopted models of OpenCourseWare and DSpace, as well as many other projects such as MIT World, TechTV, and OpenWetWare. MIT is therefore committed to complying with the new policy not only for legal reasons, but because it expresses a key component of MIT’s fundamental mission.

Although implementing the policy will create short term challenges for MIT and its investigators, we do not view those challenges as a reason to delay implementation. In the short term, without a broader, institutional approach in place, compliance necessarily falls to individual authors who will need to ensure they retain sufficient rights to comply with the terms of their research funding. There is a tension inherent in this situation, which will at times leave authors and their institutions struggling with the need to execute hundreds of individual appropriate legal contracts with publishers in order to achieve compliance. MIT’s approach to implementation assumes that over time, all players in the scholarly communication chain – research institutions, authors, funding agencies, and publishers – will need to work together to find efficient procedures and policies so that publicly funded research is shared as widely as possible, for the benefit of taxpayers and the betterment of society.

CONTINUED IN PARTS TWO AND THREE

03/17/2008 at 02:33:57 PM Wolpert Ann   Massachusetts Institute of Technology (MIT) Cambridge MA US Representative NIH Funding Recipient Organization
Comment Topic: MIT comment on implementation of the new NIH Public Access Policy: PART TWO
Comment: PART TWO In implementing the new policy, then, MIT has identified a short term strategy and intends to work diligently toward a longer term strategy. For the short term, we’ve created a team to develop a communication plan and specific documentation for MIT authors, making them aware of the new policy and its requirements. The team includes representatives from the Office of Sponsored Programs, the General Counsel’s Office, the Libraries, the Vice President for Research, the Chair of the faculty, and Biology Department faculty.

Our team has focused so far on written communications and face-to-face discussions meant to convey the basic requirements of the policy and to inform authors of what resources MIT has to assist them in compliance. The documents we’ve prepared include a web page to guide authors in complying with the policy, a draft journal submission letter, and a draft one-page overview of the key aspects of the policy. We have begun drafting a letter to be sent to each NIH Principal Investigator, and an article for the faculty newsletter is in the planning stages.

We are prepared to handle the inquiries we expect as of the April 7 implementation date, since MIT already makes available to its authors an amendment to publisher agreements that was developed in support of voluntary deposit in PubMed Central. MIT additionally support authors in compliance through a staff position in the Libraries devoted to supporting authors in retaining rights to their work.

CONTINUED IN PART THREE

03/17/2008 at 02:31:03 PM Wolpert Ann   Massachusetts Institute of Technology (MIT) Cambridge MA US Representative NIH Funding Recipient Organization
Comment Topic: MIT comment on implementation of the new NIH Public Access Policy: PART TWO
Comment: PART TWO, CONTINUED FROM PART ONE: Over the longer term, we are beginning to discuss possible institutional efforts that could potentially reduce the burden on individual authors in complying with the policy. We look forward to partnering with publishers, NIH, and others in devising structural changes that will successfully support this policy’s goal of more open access to research.

03/17/2008 at 02:20:53 PM Gaunt Marianne MLS Rutgers University Libraries New Brunswick New Jersey US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy Support
Comment: At Rutgers, the State University of New Jersey, the offices of the University Librarian, the Vice President for Research and Graduate and Professional Education, and University Counsel, have partnered to ensure compliance with the NIH Revised Policy on Enhancing Public Access to Archived Publications resulting from NIH-funded research. The University supports this new policy that will maximize both the impact of research and the development of new knowledge, and provide the U.S. taxpayers with direct access to the research results made possible by their substantial investments in the NIH. There are several ways in which the University is providing support to its NIH researchers to ensure compliance with the policy: Libraries will provide submissions to the NIH for Rutgers authors using the university’s institutional repository functionality; the Libraries, in collaboration with University Counsel, are providing copyright education and specific language that may be included in new copyright contracts; the Libraries are also assisting faculty and administrative assistants with information for those who have already signed copyright agreements and are unsure if they may have the rights to post in PubMed; the university’s copyright policy has language that encourages faculty to deposit their works in openly accessible archives; all deans in the sciences, current NIH grantees and their administrative assistants are being contacted to ensure that they are aware of the policy and how the university will support their compliance; websites for the Libraries and the Vice President for Research have coordinated information on the NIH policy and university support; library liaisons are contacting all faculty in the appropriate disciplines about the policy and will provide information and support; as part of ongoing procedures, the VP for Research and the Office of Research and Sponsored Programs will alert all new NIH grantees of the policy. The Libraries and the VP for Research are collaborating on a simple fact sheet that outlines various steps in the process and how the university supports their compliance.

03/17/2008 at 02:19:35 PM Greene Karen Ph.D. Rockalnd Psychiatric Center Orangeburg NY US Other Member of the Public
Comment Topic: tax funded research results
Comment: Research results, especially the outcome of those studies which were funded by public money, should be free and open to the public. It is not fair to pay for the research and then have to pay for the results, especially when the outcome or results of those studies may be critical to one's heal;th or wellbeing.

03/17/2008 at 02:07:14 PM FALCO liz RN ROCK PSYCH CENTERR BLAUVELT NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: RESEARCH ARTICLES
Comment: i WOULD LIKE TO SEE THE LEGISLATION ON RESEARCH DOCUMENTS BEING AVAILABLE AT NO COST WITHIN 12 MONTHS OF PUBLICATION BE PASSED.

03/17/2008 at 01:55:47 PM Albert Karen MLS Chair, Medical Library Association Committee for Advocating Scholarly Communication Philadelphia PA US Other
Comment Topic: Implementation of NIH Public Access Policy
Comment: The NIH Public Access policy constitutes a noteworthy and positive step towards opening up access to the biomedical literature. While the mandate constitutes a significant compliance burden for researchers and their institutions, it also stands to confer long-term benefits on the conduct of research in general, and on individual researchers whose newly published work will likely gain visibility and citation impact. Patients will also benefit from broader access to the medical literature, which will accrue with time. These are points librarians can use to explain the reasons behind the mandate to their constituents.

Some cancer center libraries have already taken action to create centralized support services for mandate compliance. As such, they post articles on behalf of their institution’s authors and provide additional support by interpreting copyright agreements and locating PMCID numbers. Other smaller research libraries are creating web pages of information and working with grants offices to ensure compliance. One concern is that a number of major publishers have not clearly indicated that their copyright agreements will allow authors to retain the right to comply with the mandate. Librarians and research administrators are consulting with legal counsel and approaching publisher representatives in order to ascertain the best approach to these situations. Also, the NIH Public Access FAQs do not address an exact deadline or specific number of days after publication acceptance that submission to PMC is expected to occur. It would be helpful to clarify this point and to provide FAQ information on how to post to the NIH Manuscript System on behalf of authors via an NCBI account. Finally, emailing the PMCID numbers to the author as well as the poster (librarian) following completion of the submission process would also help in retention of these numbers for future citing purposes in grant applications. Submitted by: Karen Albert, MLS, AHIP, Chair, Medical Library Association Committee for Advocating Scholarly Communication, and Library Services Director, Talbot Research Library, Fox Chase Cancer Center, Philadelphia

03/17/2008 at 01:54:07 PM Lukowski Linda BS Parent of child with Kabuki Syndrome Oswego Illinois USA Other Member of the Public
Comment Topic: Proposal Making Articles Available to Public Free of Charge
Comment: I am the mother of a child with a rare syndrome, Kabuki Syndrome. It is incredibly difficult to find medical doctors and personnel who have up-to-date information on this syndrome, and it is very difficult to parent a child without some help.

The Kabuki Syndrome Network is an entirely volunteer group of parents and has been a lifesaver for so many of us, providing information and advice as we face the many challenges of life with our children. Much of this information comes from medical articles that are available free of charge. We do not have the money to pay fees for these articles, but we are the people that need to see them the most.

Please go forward with this proposal to make all research articles that receive your funding available at no charge. You are doing such an incredible service to parents of disabled children everywhere.

Thank you.

Linda Lukowski

03/17/2008 at 01:52:45 PM Ochs John   American Chemical Society Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: ACS Overview Comments on NIH Mandate Implementation
Comment: The American Chemical Society supports public access to the results of federally funded research but asserts that the implementation plan for the NIH Public Access Policy mandate does not abide with the law creating the mandate or with the sentiment and direction of the U.S. Congress.

The NIH missed an opportunity to make its May 2005 voluntary public access policy a success by not proactively including scientific journal publishers as it developed its voluntary Public Access Policy. Consultation with publishers is critical in 2008 to prevent the agency from embarking on a similar collision course as it proceeds to implement the new mandate. Key to success will be NIH taking an active role, one based on openness and inclusiveness, to resolve the outstanding copyright and intellectual property issues that cut across a very broad and deep swath of the scientific journal publishing community.

The ACS publishes annually approximately 4,000 articles that acknowledge NIH as a research funding source. Ever since NIH directed ACS to halt article deposition into PubMed Central in December 2005, ACS has tried unsuccessfully to resolve outstanding copyright and intellectual property issues with NIH. At present, ACS has more than 3,000 manuscripts awaiting deposition.

During the 2005-2008 time period, NIH PubMed Central has accepted unauthorized postings of ACS copyrighted material, and repurposed and openly displayed such postings without adhering either to NIH’s own policy guidelines, or terms and conditions as set forth to NIH by ACS as rights holder. Issues of concern to ACS remain unresolved and will continue to be problematic and exacerbated under the new mandatory policy as outlined in NIH’s implementation plan issued on January 11, 2008.

ACS hastens to point out that the vast majority, if not all, the Society’s copyright and intellectual property concerns could be resolved if NIH would abide the original intent of the Public Access policy and post without alteration or modification the unedited author versions of peer-reviewed manuscripts on PubMed Central—without any reformatting, repurposing or modification or any mirroring of content to third-party websites—and simply link back to the final published article as the authoritative version for readers on the Society’s own website.

ACS commends the NIH for announcing a public comment process on its planned mandatory policy implementation through a Request For Information notice but questions the logic of proceeding with the announced implementation of the mandate on April 7, 2008 when the timeline for public comment submittal and the NIH’s response and possible amendment of the policy may not be complete until sometime in August 2008.

ACS has submitted much more detailed comments for NIH’s consideration at its designated website -- PublicAccessComments@NIH.gov

03/17/2008 at 01:50:20 PM Joseph Heather MBA Alliance for Taxpayer Access Washington DC US Other
Comment Topic: Taxpayers remain committed to the success of the NIH mandate and its swift implementation
Comment: The Alliance for Taxpayer Access (ATA) commends the National Institutes of Health (NIH) for moving forward with the timely implementation of its Public Access Policy. We strongly believe that it is the right of all citizens to have free and timely access to the results of our collective $28 billion annual investment in the critical biomedical research funded by the NIH.

The Alliance -- a coalition of more than 80 research organizations, libraries, patient groups and consumer advocates -- believes that the NIH Public Access Policy will facilitate the ability of researchers, physicians, clinicians, health care professionals and other members of the public to access, share, and use the results of this research. Faster and wider sharing of NIH-funded research will enable scientists to build upon it more quickly, accelerating the pace of discovery and speeding the translation of this knowledge into public benefits. This will have a profound effect on the advancement of scientific research and the improvement of public health.

The Alliance is pleased that the NIH has published implementation guidelines in a timely fashion, and our member organizations are actively working to raise awareness of the policy to ensure effective compliance within the communities we represent. Our organizations have also been developing and promoting mechanisms to help researchers prepare for manuscript deposit as well as to ensure they retain the necessary rights to comply with the policy, in accordance with current copyright law.

We are particularly pleased to note the growing list of over 300 journals (listed on the PubMed Central Web site) that have indicated their willingness to support the policy by facilitating the deposit of manuscripts -- and, in some cases, final published articles -- on behalf of NIH-funded researchers.

We believe the terms of the new NIH Public Access Policy reflect a reasonable balance of stakeholder interests with one exception: the Alliance urges the NIH to shorten the maximum time frame for this material to be embargoed from 12 months to six. A six-month embargo -- which has already been adopted by biomedical funders in Canada, the U.K., and the European Union -- better reflects the rapid pace of discovery in biomedical science and more effectively addresses the public’s pressing need for access to this publicly funded information.

03/17/2008 at 01:48:39 PM Funk Mark MLS President, Medical Library Association New York New York US Other
Comment Topic: Support for NIH Public Access Policy
Comment: The Medical Library Association(MLA) supports the NIH public access policy because researchers, students, educators, and the public will have improved access to the literature generated from federally funded scientific and medical research. The policy also will ensure that the information deposited into PubMed Central remains available for years to come. Both of these provisions are critical components in support of medical research and discovery, the development of new therapies and treatments, the delivery of high quality effective health care, and greater knowledge and understanding of health issues by the public.

MLA is pleased that implementation of the newly revised policy is on schedule and is working with members of the medical library community to support implementation of the new policy.

MLA is a nonprofit, educational organization with more than 4,500 health sciences information professional members worldwide. Founded in 1898, MLA provides lifelong educational opportunities, supports a knowledge base of health information research, and works with a global network of partners to promote the importance of quality information for improved health to the health care community and the public.

Mark E.Funk,AHIP,President,Medical Library Association,Weill Cornell Medical College, Samuel J. Wood Library, NY, NY

03/17/2008 at 01:42:33 PM Goldberg M   cancer survivor, past 10-year caregiver to parents with cancer, Parkinson's, strokes and dementia Rego Park NY US Other Member of the Public
Comment Topic: publishing results of govt.-funded research
Comment: To me it seems very simple: when _America_ pays for research, _America_ deserves to see the results. Period.

03/17/2008 at 01:42:12 PM Garrison Ellen Ph.D. American Psychological Association Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Effective Date of Implementation
Comment: NIH is to be commended for holding the March 20 public meeting and for the issuance of the upcoming Request for Information (RFI) later this month to provide the public with opportunities to comment on the new mandated public access policy and its implementation. Yet, even taken together, these actions do not substitute for a formal Notice and Comment Rulemaking, which NIH is still urged to pursue. Apparently, NIH considers its pending transformation of its current voluntary public access policy into a mandatory one as merely an interpretation of an existing policy that requires only the posting of a “revised” policy. However, this reflects a woeful miscalculation of the potential impact of this policy on our economy and international trade. Journals published by U.S. scientific, technical, and medical (STM) publishers represent about $3 billion in annual revenue, and North America-based STM publishers account for 45% of all peer-reviewed research papers published annually worldwide. The mandatory NIH public access policy would provide free, world-wide access to U.S. scientific research to countries who are competing with American business and industry, undermining the intent of the America Competes Act.

Therefore, NIH would be well advised to proceed very carefully prior to implementing this new policy to ensure sufficient time to obtain and review input from key stakeholders. Such a deliberative approach would be in keeping with the guidance provided by the U.S. Senate in report language that accompanied the omnibus appropriations bill. Specifically, the Senate requested that NIH “seek the advice of journal publishers on the implementation of the mandate to ensure that publishers’ copyright protections are maintained.”

Rather than take precipitous action, NIH should delay implementation of the public access policy for six months consistent with its own stated time frame to review comments arising from the RFI (i.e., March posting of RFI with 60-day comment period followed by 120 days for NIH to respond to comments and announce any amendments of the policy). It truly makes no sense and is highly questionable process-wise to seek informal input from the public at the end of March, implement the policy effective April 7, review the public comments, and then announce possible amendments to the policy six months later. Furthermore, if the policy were still to go into effect on April 7th, it should not apply to any grants issued before that date, counter to the current NIH guidelines that apply to NIH grants or cooperative agreements “active” in FY 2008 (which began on October 1, 2007). Otherwise, this policy would involve an unfair, retroactive imposition of grant terms and conditions that could extend back for years prior to the official April 7, 2008, implementation date.

03/17/2008 at 01:38:19 PM Garrison Ellen Ph.D. American Psychological Association Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Scope of Coverage
Comment: The statutory language applies to “all investigators funded by the NIH,” yet does not specify whether the NIH funding is in whole or in part. NIH takes the view that the policy applies to investigators with any NIH intramural research funds or any amount of direct costs funded by NIH, even if the funding is insignificant and supplemented by other public or private sources. But what if these other sources oppose the posting of their funded work on PubMed Central? The policy also holds that “Principal investigators and their institutions are responsible for ensuring all terms and conditions of awards are met.” Yet, this includes the submission of articles that arise directly from the investigators’ NIH-funded research even if they did not author or co-author the publication. In fact, NIH-funded investigators and institutions are being held responsible for making sure that these other authors are “aware of and comply with” the NIH policy. How could they possibly be able to comply with this provision?

To address these concerns, NIH should stipulate that its requirement for the deposit of peer-reviewed manuscripts in PubMed Central only applies when NIH funding represents the sole funding for the scholarly work. NIH should also modify its guidelines to state that its deposit requirement only applies to peer-reviewed manuscripts that report findings of empirical research and does NOT apply to literature reviews.

03/17/2008 at 01:37:17 PM Garrison Ellen Ph.D. American Psychological Association Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Compensation for Publishers
Comment: Underlying the new mandatory public access policy is a presumption that publishers will not incur significant financial hardship if up to 12 months is provided between the date of publication and the time the peer-reviewed manuscript will be made available to the public through PubMed Central. While this may be true for a handful of publishers, this hardly applies to the industry as a whole. For instance, the American Psychological Association is the largest publisher of behavioral science research and applications, with 37 of the premier scholarly journals in the field of psychology. The cutting-edge research that the association publishes is rarely obsolete within a year, and may have a shelf life of five to ten years. Moreover, only 15 percent of the eventual “lifetime” usage/downloads occurs within the first year after publication. So, it is imperative that adequate financial compensation be offered by NIH to offset the loss of income that the association and other publishers anticipate were all accepted, peer-reviewed manuscripts resulting from some degree of NIH support made publicly available within such a short period of time. When peer-reviewed manuscripts are made widely and freely available on line, the commercial value of the finished, published work is likely to be seriously undermined, with resulting declines in subscriptions and licensing agreements.

The NIH policy does allow for the use of grant funds for the payment of publication fees for NIH-funded authors. Yet, it is not clear whether this refers to page charges or a more comprehensive fee per article payment. In this context, it should be noted that behavioral science publishers, unlike their colleagues who publish in the biomedical sciences, do not currently receive page charges for published articles, which can be quite substantial (e.g., as much as $850 per page), from authors through their designated grant funds. Thus, NIH needs to either set aside funds to make direct payment to publishers or to include publishing costs in behavioral and social science research grants (which NIH does not do at the present time).

With respect to the first option, would it be possible for publishers to undertake direct licensing arrangements with NIH to deposit copyrighted work on behalf of authors? Would NIH be able to negotiate the terms of these licensing agreements like other non-government funding agencies have done, such as the Wellcome Trust and the Howard Hughes Medical Institute?

03/17/2008 at 01:35:34 PM Garrison Ellen Ph.D. American Psychological Association Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Copyright Concerns
Comment: The new NIH mandatory public access policy specifies that “Institutions and investigators are responsible for ensuring that any publishing or copyright agreements concerning submitted articles fully comply with this Policy.” This provision places a heavy, undue burden on institutions and investigators to uphold the copyright provision of the statute. According to the statute, it is the responsibility of NIH, not the institutions or investigators, to “implement the public access policy in a manner consistent with copyright law.” The proposed means of implementation violates fundamental copyright principles – namely, the right of publishers to reproduce and distribute their work. Publishers and authors for the first time ever are essentially being made to forego their copyright interests without just compensation for their investments. It is critical to realize that publishers add immense value to the original manuscripts submitted by investigators based on their NIH-funded research. This investment takes the form of peer review, copyediting, and design production. Other related tasks undertaken by publishers that bolster the scientific enterprise and thereby add value to individual scholarly works include: editorial selection of manuscripts to be published, marketing, distribution, and preservation. The public access policy must not incur a negative economic impact on publishers, both in this country and internationally, by harming or displacing their private sector activities that help to ensure the highest possible quality of research. The NIH posting of peer-reviewed manuscripts accepted for publication by its very nature compromises the quality of scientific publishing by ultimately making available two different versions of scientific papers. The first is the inferior, peer-reviewed manuscript that has not yet benefited from the final copyediting, fact-checking, and proofreading required for formal publication, and the second is the definitive, publisher-authenticated version.

How does NIH propose to ensure that the postings in PubMed Central will not devastate the copyright interests of publishers, the value that they add to the research, and the interests of the public in maintaining the quality of scientific publishing?

03/17/2008 at 01:29:46 PM Sugars Stephanie patient Peutz-Jeghers Syndrome Online Support Group Kenwood CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Access to Medical Journal Articles
Comment: As a person living with a rare genetic disorder, Peutz-Jeghers syndrome (PJS), and a common cancer, metastatic breast, my survival has for years depended upon access to medical journal articles. Whether I’m seeking new doctors for second opinions, gathering information for my current doctors, investigating new treatments, keeping up on research or finding information for members of the PJS Online Support Group, access to medical journal articles is imperative.

Over the past 25 years I’ve collected over 200 articles on PJS by traveling many miles to medical center libraries. While the photocopy/printout costs are reasonable – this is time consuming and taxing for someone who is seriously ill. The alternative, to print out articles from a computer, is prohibitively expensive. It’s difficult to judge the value of an article from a PubMed abstract. Spending a dollar or two for copy/print costs is one thing, spending over $30 is another.

Public Access will help physicians as well as patients. Easy access to recent journal articles will help them keep up to date on research and treatment options – an invaluable aid whether treating patients with rare or common illnesses.

Thank you for considering my comment, Stephanie Sugars

03/17/2008 at 01:27:31 PM Ludwig Deborah MLIS University of Kansas Lawrence KS US Representative NIH Funding Recipient Organization
Comment Topic: University of Kansas
Comment: At the University of Kansas, the office of Research and Graduate Studies and the KU Libraries are working together to ensure that our researchers understand the new NIH open access policy and will comply by depositing NIH-funded articles in PubMed Central.

NIH research is publicly-funded and taxpayer-supported and yields important and timely scientific information. Open access will ensure that NIH-funded research is readily accessible to the research community, faculty, students, and the general public. Students and faculty will use PubMed Central to bolster their engagement in scientific learning. Researchers will continue to benefit from the peer review of their research and the prestige of journal publication while their research receives broader exposure to scholars and citizens alike.

We support this important national initiative.

William Sharp - Director, Research Integrity, Office of Research and Graduate Studies; Deborah Ludwig - Interim Assistant Dean, KU Libraries; Holly Mercer - Coordinator for Scholar Services, KU Libraries

03/17/2008 at 01:23:18 PM Sparks JoAnne M.S. Memorial Sloan-Kettering New York NY US Representative NIH Funding Recipient Organization
Comment Topic: Support
Comment: As an information professional and library director, I strongly support the NIH Public Access Policy. The role of the modern librarian is to facilitate access to information for their constituents. The NIH mandate is in keeping with the mission of every librarian. The MSK Library is working closely with our Research Resources group to ensure effective communication, training and compliance at our institution.

03/17/2008 at 12:58:42 PM Clugston Amy   Syndromes Without A Name USA Otsego MI US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access Undiagnosed Paitents
Comment: I think public access will play an important role in the health of individuals who are experiencing undiagnosed situations. They need to educate themselves about the symptoms they are having, so that they can correctly describe their symptoms to their doctors. Often times when a person has a symptom of some disease or syndrome that they do not yet know the name of, they may leave out very important clues that may guide the doctor in making a correct diagnosis. If they inform their selves of diseases and syndromes, when they see some similarities they will likely feel more comfortable asking their doctors. This will happen because they will feel more capable of asking the right questions.

03/17/2008 at 12:56:38 PM Polhemus Craig JD Prader-Willi Syndrome Association (USA) Sarasota FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Support
Comment: On behalf of the Prader-Willi Syndrome Association (USA), I write in strong support of the Revised Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research, published as NOT-OD-08-033 on January 11, 2008.

The Prader-Willi Syndrome Association (USA) supported the legislation that became Division G, Title II, Section 218 of PL 110-161. As because Prader-Willi syndrome (PWS) is a rare disease, families of those with PWS have an avid need for relevant health information. NIH plays a significant part in funding the creation of such knowledge, and the Public Access Policy will therefore help thousands of families including those with PWS.

Clearly it will be desirable for relevant journals to assume responsibility for submitting covered articles (or, ideally, all their articles regardless of source of funding) to PubMed Central to remove this burden from individual researchers. To the extent that NIH can ease the submission process or provide incentives to publishers to submit these articles directly, those would be positive additions to the current policy.

Also, NIH should take steps to ensure that if publishers impose costs upon NIH-funded researchers to comply with this policy, these costs do not unduly diminish NIH or other funds available to researchers for their funded research.

Craig

***************************************** Craig Polhemus Executive Director Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500 Sarasota, FL 34238 Voice (800) 926-4797 ext. 720 Direct line (941) 487-6720 Fax (941) 312-0142 www.pwsausa.org cpolhemus@pwsausa.org *****************************************

03/17/2008 at 12:53:36 PM Balis Philip MS US TOO Frisco TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: As someone with prostate cancer I am coninually doing research. And, as a tax payer, I believe that the research that I do include all federal funded research.

I want to be a smart consumer of health care. To do that I need access to all available research. Make it public!

03/17/2008 at 12:46:13 PM Saatvedt Benita BS Periodic Paralysis Association Columbia City OR US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access to NIH Funded Research
Comment: Please allow access to NIH funded research. I have studied Periodic Paralysis for over ten years. I cobbled together research from abstracts and thirty-year-old research. With a medical dictionary, Merck's manual, and a slew of other books, I learned to translate medical terminology into English. From my readings I've gleaned enough information to teach patients the importance of diet, exercise, and medical intervention.

Familial Periodic Paralysis is often misdiagnosed and difficult to understand. Patients appear healthy until their muscles fail to contract and they become paralyzed. This paralysis attack can happen anywhere, at anytime, and can be quite dangerous.

In the beginning there were three known variants of Familial Periodic Paralysis. Now researchers are working to identify many more variants and mutations.

We need free access to NIH funded research because of the financial barrier that prevents ordinary people like me from reading important ion channel research. My reading and deciphering of abstracts and literature has helped hundreds of patients worldwide. All of my work as a patient advocate has been completely voluntary.

With free access, it would allow more patients and their advocacy groups to help open communication with their doctors. It will allow more interaction between patient, doctor, and researcher. Patients and doctors would be better informed about the most recent research. Overworked healthcare worker currently do not have time to research each specific disorder their patients suffer from. Free access opens communication between the three most important groups: patient, research, and physician. Currently, the conduit of information from research group to physician is quite long. Allowing access to NIH funded research shortens that conduit from years to weeks. Please consider the disabled, hurting patients who will gain the most. Financial gain is not always the greatest reward. For me, personally, my research has kept me out of a wheelchair. I no longer use a cane. My last ER visit, via ambulance, was three years ago. I can keep up with my 11-year-old daughter. All of this happened because I was able to find answers hidden deep in NIH and MDA funded research.

03/17/2008 at 12:42:44 PM Saatvedt Benita BS Periodic Paralysis Association Columbia City OR US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH funded research
Comment:  to NIH funded research. I have studied Periodic Paralysis for over ten years. I cobbled together research from abstracts and thirty-year-old research. With a medical dictionary, Merck's manual, and a slew of other books, I learned to translate medical terminology into English. From my readings I've gleaned enough information to teach patients the importance of diet, exercise, and medical intervention.

Familial Periodic Paralysis is often misdiagnosed and difficult to understand. Patients appear healthy until their muscles fail to contract and they become paralyzed. This paralysis attack can happen anywhere, at anytime, and can be quite dangerous.

In the beginning there were three known variants of Familial Periodic Paralysis. Now researchers are working to identify many more variants and mutations.

We need free access to NIH funded research because of the financial barrier that prevents ordinary people like me from reading important ion channel research. My reading and deciphering of abstracts and literature has helped hundreds of patients worldwide. All of my work as a patient advocate has been completely voluntary.

With free access, it would allow more patients and their advocacy groups to help open communication with their doctors. It will allow more interaction between patient, doctor, and researcher. Patients and doctors would be better informed about the most recent research. Overworked healthcare worker currently do not have time to research each specific disorder their patients suffer from. Free access opens communication between the three most important groups: patient, research, and physician. Currently, the conduit of information from research group to physician is quite long. Allowing access to NIH funded research shortens that conduit from years to weeks. Please consider the disabled, hurting patients who will gain the most. Financial gain is not always the greatest reward. For me, personally, my research has kept me out of a wheelchair. I no longer use a cane. My last ER visit, via ambulance, was three years ago. I can keep up with my 11-year-old daughter. All of this happened because I was able to find answers hidden deep in NIH and MDA funded research.

03/17/2008 at 12:40:09 PM Gada A ------------ Cancer Patient Modesto CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Urgent need for prompt access Cancer Studies
Comment: Cancer patients desperately need FREE access WHEN the results of government supported study results are published.

It is sad that cancer patients are often the LAST ONES to be able to access results that could very well serve to save their lives.

I daresay, those who are opposed to free access would very quickly change their minds if THEY were struggling with a life threatening cancer!

03/17/2008 at 12:39:26 PM Leonard Thomas C. Ph.D. University of California, Berkeley Berkeley CA US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: NIH Public Access Policy

The Library of the University of California at Berkeley is strongly supportive of the NIH mandate as both good public policy and a research-friendly regulation. Berkeley-based research contributes to solving national and global health problems. And Berkeley libraries are a key conduit for information flows.

To cite one example, our Public Health Library serves roughly 750 active users of health research, including California state government agencies such as the Department of Public Health, Department of Health Care Services, Department of Toxic Substances (Cal/EPA), and Office of Environmental Health Hazard Assessment (Cal/EPA). (On a personal note, the mission here is exemplified by the career of Berkeley’s distinguished Public Health graduate, Dr. Julie Louise Gerberding, Director of the Centers for Disease Control and Prevention.) Some 15,500 requests for materials are received per annum in the Public Health Library from researchers. Opening up access to even somewhat dated research from NIH-funded projects will aid immensely in the health-related study in the interest of public health that goes on at campus and government agencies in California.

We see no problem in ensuring that our researchers with NIH funds meet the requirements of the new law. Modern librarians prize assignments to make scholarly communication more available in the society that funds research. The Library is currently working with our Sponsored Projects Office and Office of Research to ensure that all NIH grant recipients are aware of the new rules. As part of this coordinated strategy, the Library has developed an informational webpage with key dates and requirements at http://www.lib.berkeley.edu/scholarlycommunication/nih_mandate.html

We also note that the University of California’s Office of President has issued a "Compliance Memo" to all UC campus research administration officers, including our Office of Sponsored Projects, outlining steps to be taken ensuring a consistent approach across the ten campuses of the University of California.

Thomas C. Leonard University Librarian Professor in the Graduate School of Journalism University of California, Berkeley

03/17/2008 at 12:26:39 PM Bastian Dawn MA Colorado State University Fort Collins CO US Other
Comment Topic: Public Access Policy Assessment
Comment: How does NIH intend to measure the impact of the new public access policy?

03/17/2008 at 12:19:09 PM Stacey Gary Ph.D. American Society of Plant Biologists Rockville MD US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Submissions of Copyright-Protected Documents to PubMed Central
Comment: Dear Dr. Zerhouni:

The American Society of Plant Biologists (ASPB) is a non-profit society of 5,000 scientists. ASPB publishes the two most frequently cited journals in plant science: Plant Physiology and The Plant Cell.

ASPB is concerned that the published policy of the National Institutes of Health (NIH) on submissions to PubMed Central is not consistent with the provision on access passed by the Congress.

The relevant provision of the law passed by Congress is found in Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008). This provision of the law states:

SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.

Copyright law

The law clearly states the importance of protecting publisher’s copyright ownership. The law says, “Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law." Implementation of the access policy is contingent upon this provision. It is not consistent with copyright law for NIH to mandate submission of copyright-protected articles to a federal publisher website, PubMed Central, without the agreement of publishers’ who hold copyright to the articles. NIH needs to revise its policy to remove mandatory submission of publisher’s articles to PubMed Central.

Congress Addressed “Manuscripts” – not “Articles”

Despite the reference to “manuscripts” in the law, NIH policy refers to scientists submitting “journal articles” to PubMed Central.

NIH needs to amend its policy to include the language used by Congress in the Consolidated Appropriations Act. Congress clearly used the word “manuscripts” and at no time used the word “article.” The term “article” refers to the finished, completely edited document that is submitted for copyright. In comparison, a “manuscript” is not a fully edited document. The NIH Policy is out of compliance with the law by calling for submission of “articles” instead of “manuscripts.”

This NIH Policy will threaten the viability of some publishers. Readers will soon learn they can read the publisher’s articles for free on PubMed Central instead of paying for them in a publishers’ subscription. Some readers will decide not to renew subscriptions, because they can read the articles for free on PubMed Central.

Thank you for the opportunity to provide these comments. Please let us know if we could provide further information.

Sincerely, Gary Stacey, Chair ASPB Committee on Public Affairs

03/17/2008 at 12:17:06 PM Blake Joni PhD Greater Western Library Alliance Kansas City MO US Other
Comment Topic: Support for NIH Public Access Policy
Comment: I submit these comments on behalf of the Greater Western Library Alliance (GWLA), a consortium of 31 research libraries west of the Mississippi (www.gwla.org/library.html). Nearly all of our member institutions are substantial recipients of NIH funds.

As an indicator of our overwhelming support for the Public Access Policy, we proactively held a symposium on March 10 on policy implementation and compliance. This meeting brought together librarians, medical school personnel, university research administrators and faculty to ensure that GWLA-member institutions were on schedule to meet the April 7th compliance deadline.

The consensus of the symposium attendees:

1. GWLA-member libraries unanimously support this policy. 2. We are confident the policy will not harm the peer review process. 3. We believe the policy will increase the use and usefulness of the research conducted on our campuses. 4. We advocate for the shortest possible embargo period. 5. We urge NIH to keep the policy deadline firm at April 7, 2008. Administrators at GWLA-member institutions are working out the compliance workflows and communications infrastructure issues at each campus, and are confident they will be prepared for the deadline. 6. We urge the expansion of this policy beyond NIH to all federally-funded research. One faculty member in attendance said he “can’t wait until this policy applies to my discipline.”

03/17/2008 at 12:08:19 PM Reid Darcy   Mother Arlington VA US Other
Comment Topic: Access to Publicly Funded Medical Articles
Comment: As the mother of a five-year-old child who died of a brain tumor, my duty to her was to keep her safe during treatment by making the most informed choices. This was made much more difficult, because 1) I needed easy access to publicly-funded research articles, and 2) Too much of the publicly-funded research was never published anywhere. I feel strongly that as a tax payer, this research we pay for should be there when the most catastrophic events happen in people's lives, and that if one receives public monies, there is an obligation for these research scientists to publish the results. Eight years later, none of the results from these clinical trials offered to my daughter, some of them out of NIH, have been published. How can anyone - younger doctors and new patients - benefit if they don't know the outcomes.

03/17/2008 at 12:07:58 PM Olsen Evelyn BS Webcafe Centennial CO US Other Member of the Public
Comment Topic: Ensure public access to NIH funded publications
Comment: It is critical, and long past time, for the NIH funded articles/publications be made available to the public at NO cost. Thank you for pursuing this matter. Sincerely, Evelyn Olsen

03/17/2008 at 12:02:19 PM Furlong Patricia msn Parent Project Muscular Dystrophy Middletown OHIO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to NIH funded research
Comment: The level of access to NIH-funded research made possible by the new mandate will impact the disease process in novel ways, improving the ability of scientists to advance therapies and enabling patients and their advocates to participate more effectively. The advance is timely, much-needed, and – we anticipate – an indication of increasingly enhanced access in future

03/17/2008 at 12:02:13 PM Borrego Stacey Interpreter for the deaf Kabuki Syndrome network Batavia IL US Other
Comment Topic:  research to be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 6 months
Comment: I am a parent of a child with a rare syndrome - Kabuki Syndrome. It is incredibly difficult to find any information on this syndrome, and it is very difficult to parent a child through all the passages of life without some help.

The Kabuki Syndrome Network, an entirely volunteer group of parents, has been a lifesaver for so many of us, providing information and advice as we face the many challenges of life with our children. So much of this information comes from medical articles that are available free of charge. We do not have the money to pay fees for these articles, but we are the people that need to see them the most.

Please, please, go forward with this proposal to make all research articles that receive your funding available at no charge. You are doing such an incredible service to parents of disabled children everywhere.

Thank you.

Stacey

03/17/2008 at 12:01:44 PM Myerson Gary M.A. None San Diego CA US Other Member of the Public
Comment Topic: Availability of research articles
Comment: For those of us who are CA patients and have and ongoing interest in learning more and understanding better the various aspects of the disease it would be most helpful to have the research articles available to us without having to pay for them.

03/17/2008 at 11:59:31 AM Kelly Patrick   John Wiley and Sons Hoboken NJ US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Private Sector Impact and Compensation
Comment: The public indisputably benefits from new cures and innovative discoveries generated by scientists who access and build upon the research described in first-class articles published and disseminated via advanced information systems supported by the substantial investments of publishers. Peer review represents a significant investment by publishers like Wiley, and neither originates with licensor-authors nor is it the product of NIH funding. Yet under the new policy, NIH insists on appropriating the final, peer-reviewed manuscript. Publishers recoup the expense of peer review, production, and distribution by several means, including commercial sales both domestically and abroad. As a result, when copyrighted articles are freely available online, their commercial value is significantly eroded. How will you ensure that the policy will protect publishers’ copyrighted assets and maintain the commercial value of the copyrighted manuscripts? How will you ensure that any revisions to copyrighted materials such as reformatting, enhancing, linking or otherwise changing the articles do not undermine the rights and value-added provided by publishers like Wiley? How will you ensure that the articles on PMC maintain the publishers’ branding, and any corresponding disclaimers and notices?

03/17/2008 at 11:58:21 AM Kelly Patrick   John Wiley and Sons Hoboken NJ US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Critical Need for a Formal Consultative Mechanism Between NIH and Publishers
Comment: We are encouraged that NIH is finally starting a dialogue with publishers, investigators, and representatives from scientific associations to ensure the success of this initiative. However, Wiley believes that NIH should adopt a more cautious and thoughtful approach, following through in its partnerships with scientific publishers in exploring through a formal process how to properly implement this new policy. Indeed, rushing implementation could carry with it the potential of causing irreparable harm to the integrity of science and to the very mission of NIH. The Senate has directed NIH "to seek and carefully take into account the advice of journal publishers on the implementation of this policy.” How exactly will NIH incorporate the concerns of publishers moving forward if the policy is already implemented?

03/17/2008 at 11:54:16 AM Ross Betsy B.S. Husband has rcc Warwick RI US Other Member of the Public
Comment Topic: Free Public Access To NIH Cancer Research
Comment: The American public needs access to the NIH research. Patients can no longer completely depend on their doctors to provide them with all the necessary information. As taxpayers, we are paying for this research, and we have a right to the results. People are dying every day because they lack the information to make the correct decisions regarding their treatment. Please make this information available.

03/17/2008 at 11:53:08 AM Kelly Patrick   John Wiley and Sons Hoboken NJ US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Cost and Management of Mandatory Public Access Policy
Comment: The mandatory public access policy will not change the cost of scientific publishing, but will shift the burden of that cost away from scientific publishers and onto authors and the funding agency. At what cost? Why is simply linking to publishers’ web sites, rather than mandatory deposition at PubMed Central, not acceptable? It would certainly be a more efficient, less costly way to achieve the desired increased access. The policy provides for publisher deposit of final published articles on behalf of authors, and includes allowance for the use of grant funds in the payment of publication fees levied on NIH-funded authors. Will NIH be empowered to negotiate such licensing terms, including payment, on a publisher-by-publisher basis, as certain non-government funding agencies have done?

03/17/2008 at 11:51:54 AM VanDerBos Trisha   Mother to Neuroblastoma Survivor Grand Ledge MI US Other Member of the Public
Comment Topic: Public Access
Comment: As a mother to a 4 year old high risk Neuroblastoma child, I urge you to allow public access to studies. Becoming more informed about treatment advances can only lead to better communication between doctor and patient and improved treatment and survival.

03/17/2008 at 11:50:32 AM Kelley Patrick   John Wiley and Sons Hoboken NJ US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Private Sector Impact and Compensation
Comment: The public indisputably benefits from new cures and innovative discoveries generated by scientists who access and build upon the research described in first-class articles published and disseminated via advanced information systems supported by the substantial investments of publishers. Peer review represents a significant investment by publishers like Wiley, and neither originates with licensor-authors nor is it the product of NIH funding. Yet under the new policy, NIH insists on appropriating the final, peer-reviewed manuscript. Publishers recoup the expense of peer review, production, and distribution by several means, including commercial sales both domestically and abroad. As a result, when copyrighted articles are freely available online, their commercial value is significantly eroded. How will you ensure that the policy will protect publishers’ copyrighted assets and maintain the commercial value of the copyrighted manuscripts? How will you ensure that any revisions to copyrighted materials such as reformatting, enhancing, linking or otherwise changing the articles do not undermine the rights and value-added provided by publishers like Wiley? How will you ensure that the articles on PMC maintain the publishers’ branding, and any corresponding disclaimers and notices?

03/17/2008 at 11:50:28 AM Capaldo Dr. Theodora Ed.D New England Anti-Vivisection Society Boston MA US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: Affiliation: New England Anti-Vivisection Society (NEAVS), Boston, MA

On behalf of our 25,000 members, NEAVS, a national animal protection organization, strongly supports the NIH Public Access Policy. As a not-for-profit organization, we have an on-going and important need for information regarding current research. Such information is necessary to fulfill program needs that are consistent with our mission -- a mission that is funded by our members' donations (the vast majority of whom are tax paying U.S. citizens). Having to pay for access to publications that result from biomedical research that was already paid for by public tax dollars is not only costly and a burden on our budget, but is an unfair double expense for our supporters. Further, the current process to access such information is not only costly but lengthy and cumbersome. To effectively do our work and maintain our fiduciary responsibility to our supporters, we need to be able to access publications even sooner than the current allowance of 12 months. Science moves quickly and obtaining current information is critical to fulfilling our mission. Additionally, we believe that through FOIA, the American public should have access to all information regarding animals in NIH funded research, even if such research is being done on animals housed in private institutions. The loophole that has allowed institutions that receive private and public funds to side step FOIA as well as state sunshine laws, has prevented proper monitoring, evaluation, or other critical thinking regarding what is and is not resulting from the billions of dollars of tax payer money that are spent each year on research. Further, the American public reluctantly supports animal research only when there are no alternatives, and only if they are assured humane treatment and freedom from pain and suffering. All Americans, including publicly supported not-for-profits who work on their behalf, should have free access to research publications. Thank you.

03/17/2008 at 11:48:22 AM Switzer Al BA, BEd Prostate Cancer survivor Ancaster Ontario Canada Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH research
Comment: I am a patient who takes ownership of my health care, and I need high quality access to health information. I think that publicly funded research should be readily available to the public, as that is where the ownership truly resides.

03/17/2008 at 11:46:53 AM Buys Susan   Kabuki Syndrome Network Russell Ontario Canada Other Member of the Public
Comment Topic: Public access to articles
Comment: I am a parent of a child with a rare syndrome - Kabuki Syndrome. It is incredibly difficult to find any information on this syndrome, and it is very difficult to parent a child through all the passages of life without some help.

The Kabuki Syndrome Network, an entirely volunteer group of parents, has been a lifesave for so many of us, providing information and advice as we face the many challenges of life with our children. So much of this information comes from medical articles that are available free of charge. We do not have the money to pay fees for these articles, but we are the people that need to see them the most.

Please, please, go forward with this proposal to make all research articles that receive your funding available at no charge. You are doing such an incredible service to parents of disabled children everywhere.

Thank you.

03/17/2008 at 11:42:20 AM Kelley Patrick   John Wiley and Sons Hoboken NJ US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Formal Consultative Mechanism Between NIH and Publishers
Comment: We are encouraged that NIH is finally starting a dialogue with publishers, investigators, and representatives from scientific associations to ensure the success of this initiative. However, Wiley believes that NIH should adopt a more cautious and thoughtful approach, following through in its partnerships with scientific publishers in exploring through a formal process how to properly implement this new policy. Indeed, rushing implementation could carry with it the potential of causing irreparable harm to the integrity of science and to the very mission of NIH. The Senate has directed NIH "to seek and carefully take into account the advice of journal publishers on the implementation of this policy.” How exactly will NIH incorporate the concerns of publishers moving forward if the policy is already implemented?

03/17/2008 at 11:40:35 AM Miller Rush Ph.D. University of Pittsburgh Pittsburgh PA US Representative NIH Funding Recipient Organization
Comment Topic: Implementation of Policy
Comment: The University of Pittsburgh Libraries strongly support the new NIH public access requirement and its implementation in April, which will result in the wider distribution of results from biomedical research results, from the University of Pittsburgh and other leading universities. Researchers at the University of Pittsburgh receive grants in excess of $450 million from NIH last year and thus have a large stake in the outcome of this legislation. We are prepared to support and assist these scholars in meeting the requirements of the public access policy. The Health Sciences Library System has already held a number of special workshops for faculty with NIH grants in order to communicate directly with them about this new requirement and to provide direct assistance to them as needed to comply. They have also prepared a web site outlining the policy with useful information to ease compliance. The main University Library System is preparing to implement an institutional repository (much of which has been in place for several years) which will serve as an additional public outlet for researchers at the University. We have been coordinating these and other activities with the Vice Provost for Research. We are requesting that our authors and principal investigators alert publishers of their intent to comply with the NIH policy at the time they submit their manuscripts, and to insert appropriate copyright language in their publishers’ agreements if it is needed when manuscripts are accepted for publication. Our internal grant processing systems have been altered to remind authors and principal investigators of the requirements of this policy.

03/17/2008 at 11:32:03 AM Frydman Gilles   ACOR: Association of Cancer Online Resources New York NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Access and Functional Health Literacy
Comment: More and more research has demonstrated that higher levels of functional health literacy are associated with more knowledge about chronic or life threatening conditions, higher self-reported health status and lowered rates of hospitalization, likely resulting in lower health care expenditures.

A nation subjected to ever increasing healthcare costs cannot ignore any longer the positive national financial impact of OA self-archiving as is required under the Revised Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research.

As is amply clear in so many of the comments made in the last few days, patients suffering from cancer and of rare diseases have already understood that knowledge is power. For those suffering from rare diseases, the higher the level of functional health literacy, the more they are able to truly partner with the few specialists in their condition and obtain optimal care. Access to full text peer-reviewed publications representing the current state-of-the-art knowledge can easily make the difference between life and death. That fact alone is sufficient to strongly support OA policies.

We just hope that, after an initial period to pilot the implementation of the new policy, the next step will be a reduction of the 12-months period to a 6-months period and then to a 3-months period.

03/17/2008 at 11:23:43 AM Sprague Stephen none patient advocate Staten Island New York US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access policy
Comment: I was diagnosed with leukemia in 1995 at a time when access to information for patients was nearly impossible. Today, with the proliferation of the internet, info is plentiful, but often difficult to seperate fact from fiction. In an era when pro-active patients have a desire to know more, and the medical community is learning how to better deal with informed patients, the NIH's open access to credible information will make it easier for the patient community to become better informed and better able to make good decisions about treatment. As a grateful cord blood transplant recipient who found information the hard way, thank you for making this possible.

Stephen R. Sprague Staten Island, NY

03/17/2008 at 11:15:05 AM Waldenfels James BA, MA Prostate cancer survivor Annandale VA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access policy
Comment: Open access to papers reporting research conducted in part with NIH funding will be helpful to survivors and should not be burdensome to subscription publications.

Such access is particularly important to cancer community leaders and patients with advanced cases, like me. I have attended about a half dozen FDA hearings and have delivered oral statements at several. I have also attended four national conventions on prostate cancer, have been a Scientist-Survivor Program participant in 2005 and 2006 in the program sponsored by the American Association for Cancer Research, have been a consumer reviewer for peer reviews by the Prostate Cancer Research Program of the Congressionally Directed Medical Research Program in 2006 and 2007, and am a director of the Virginia Prostate Cancer Coalition. I am on the web and internet daily with other patients and caregivers.

I make great use of PubMed, but I find that access to complete papers often adds great value to understanding and follow-up communication. Studying complete papers also enables survivors to participate meaningfully in current medical issues. Online access means I won't have to put off research until the next time I can fit in a trip to a medical library, and it will also be less time consuming. These are important benefits.

Withholding access for a year, as proposed, should not be a significant hindrance to cancer community leaders like me, but it should preserve the subscription base for medical publishers. To me, that makes the proposal a win-win proposition. Providing access to the public as proposed will also have the important benefit of increasing the salience of Federally funded medical research. This is very important. As a prostate cancer community leader, I find that most survivors, let alone the general public, and most politicians have a grossly inadequate concept of the important role played by Federal funding. Among other benefits, having online access will let us quote and refer key parties directly to important research.

03/17/2008 at 11:10:32 AM Ross Susan Ph.D. The University of Southern Mississippi Bay St. Louis MS US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to Research Publications
Comment: Public access for patients can make significant differences in survival -- as patients and physicians and other team members coordinate treatment. This is especially true in tough cases and rare cancer. I am fighting to survive both. When I click and get a "no access" message after finding a relevant study, I feel frustrated and angry (as if my fight for my life doesn't matter). I have paid taxes for 40 years and think I should have access to Govt. funded research reports.

Please provide public access.

03/17/2008 at 11:07:56 AM taylor a a - - - - - bladder-cancer-cafe/listserv/acor.org group member modesto ca US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: free access to all government supported cancer study results
Comment:  cancer patients need immediate access to results in order to determine the best course for survival. since there are so many different forms of cancers, it is foolhardy to expect doctors to be up to date. we have to be our own advocate in order to survive. this is vitally important to patients who live in outlying areas far away from mainstream medical facilities.

bottom line: cancer patients can't afford to wait a year or more to gain access to results that could impact the decisions we are currently faced with.

due to the limited availablilty of current study results.... i would not have survived my bladder cancer battle without the knowledgeable support of the members of the awesome acor.org bladder cancer cafe.

while I am exceedingly grateful to have found this group, it is a sad commentary that individuals cannot access study results that could very well end upsaving their life

03/17/2008 at 11:07:21 AM Petersen Mike BS None Duncannon PA US Other Member of the Public
Comment Topic: Availability of research data
Comment: I was told by my sister that I should comment on this topic due to my personal experience. In a large bit of irony both my sister and I were involved in a great deal of personal research her for her son with lukemia and me with my wife and a diagnosed Brain tumor. In the course of research our concern was always finding relevant and recent Tf not up to the minute information on treatments and outcomes. this was seldom easy and often times very difficult. Anything, and I do mean anything that slows or stops the flow of information is impeding progress. On a personal level this is upsetting, on an emotional level it is devestating given to possible outcome of losing a loved one due to information not being available. Any small bit of information may be the key or shred of hope that could make the difference between life, death of major disability. To slow the process because of publication requirements or rights or any administrative requirements is an incredible shame. In the realm of information gathering , more is always better. Hope this helps. I have a lot more to say but this highlights my concerns.

03/17/2008 at 11:04:59 AM Terry Sharon MA PXE International Washington DC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: PXE patients need these articles released to the public
Comment: We applaud the Congress in its wisdom for enacting the policy expressed in Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008 and National Institutes of Health (NIH) for implementing this mandatory open access policy. Patients must be empowered to make medical decisions about their health and that of their loved ones. Especially for those with rare diseases, the cutting edge research performed at NIH provides insight as to the nature of these conditions and can provide medical professionals with further insight on possible treatments and interventions. However, access to these vital research findings has been limited to the elite few who may have costly subscriptions to journals containing published research results. As a result, patients have been forced to add to their suffering, beyond their disease and need for knowledge, to financial struggles as well, in an effort to access these findings. American taxpayers are entitled to open access. Widespread access to the information contained in these articles is an essential, inseparable component of our nation's investment in science. We recommend changing the period to 6 months and releasing articles thereafter.

03/17/2008 at 11:00:13 AM Ault Harold BA Member of the Public Savage MD US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Mandate Public Access
Comment: As one diagnosed with bladder cancer I strongly urge Public Access be mandated so that I and others will be able to research any information that may have some influence on decisions for treatment.

03/17/2008 at 10:56:57 AM Terry Sharon MA Genetic Alliance Washington DC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: The public's need for access to publically funded research
Comment: Genetic Alliance transforms health through genetics. We integrate individual, family, and community perspectives to improve health systems and services. We bring together diverse stakeholders to create novel partnership in advocacy. We promote individualized decision-making through increased access to information.

We applaud the Congress in its wisdom for enacting the policy expressed in Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008and National Institutes of Health (NIH) for implementing this mandatory open access policy.

Consumers must be empowered to make medical decisions about their health and that of their loved ones. Especially for those with rare diseases, the cutting edge research performed at NIH provides insight as to the nature of these conditions and can provide medical professionals with further insight on possible treatments and interventions.

However, access to these vital research findings has been limited to the elite few who may have costly subscriptions to journals containing published research results. As a result, consumers have been forced to add to their suffering, beyond their disease and need for knowledge, to financial struggles as well, in an effort to access these findings.

The consumer community was heartened with NIH’s voluntary policy two years ago to deposit research findings into a free, online database. However, less than 5% of individual researchers elected to submit their findings. As a result, public access to research findings was impeded. Quite obviously, this is not an area that will thrive with voluntary submission.

The mandatory policy directed by Congress in recent fiscal year 2008 appropriations legislation is a necessary step to ensuring that NIH tracks its investments and corresponding results in federally funded research, has a complete archive of this research, and enhances public access to these assets. Genetic Alliance supports resource sharing, community commons and strengthening of the broad networks empowered by information. This is a strong step in a direction that will enable novel partnership to accelerate translation of biomedical research into better health.

American taxpayers are entitled to open access. Widespread access to the information contained in these articles is an essential, inseparable component of our nation's investment in science.

03/17/2008 at 10:53:15 AM Terry Sharon MA Genetic Alliance Washington DC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Advocates need for immediate access to research findings
Comment: I am writing to you to encourage your support of mandatory open access policy at the National Institutes of Health (NIH).

Genetic Alliance’s network includes hundreds of disease-specific advocacy organizations, in partnership with universities, companies, government agencies and policy organizations. The network is an open space for thousands of shared resources, creative tools, and dozens of focused programs.

The organizations we represent have varied needs: technical assistance, building and maintenance of robust information systems, and public policies that promote the translation of basic research into therapies and treatments. In particular, Genetic Alliance identifies solutions to emerging problems and works to reduce obstacles to rapid and effective translation of research into accessible technologies and services that improve human health.

Advocacy organizations such as those we represent lead entire research endeavors, and so spend countless hours building research consortium, developing registries, managing blood and tissue banks and initiating and managing clinical trials. Despite our nation's significant spending on biomedical research through NIH, these organizations face numerous hurdles in accessing articles that report the results of this taxpayer-funded research. We uniformly pay $30 ad more per single article.

We should not spend hundreds of extra dollars each year to simply access the results of research funded by our tax dollars. Open access policy is a necessary step in the right direction. In fact, we believe that 12 months is too long. Information as critical as this should be available immediately. Understanding that there are logistical issues and also acquiescing to the need for a transition period, we support a 6 month period at this point, and look to the day when we can access these results immediately upon publication.

We applaud Congress for mandating deposit of NIH-funded research findings into a free, online database.

03/17/2008 at 10:52:58 AM Schafer Dee   Cancer Survivor Pioche NV US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Research Results Should Be Available Free
Comment: Many patients research extensively and take new treatment information to their doctors, which has the potential to save their lives.

Publishers' profits should not take precedence over free access to valuable health research data, assuming the research wasn't done only for the the investigators' need to publish. The 12 month period is too long; New England Journal of Medicine is only 6 months.

03/17/2008 at 10:44:17 AM Sherman Cathy   Birt Hogg Dube Family Alliance York PA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH funded research
Comment: For those with a rare syndrome or rare disease, using medical research becomes a way to educate themselves & their families. When they are seeing a doctor who has never seen the condition it becomes a way for the doctor to get information as well. This can make a tremendous impact in the treatment plan and in the success of that plan. Access to NIH funded research is invaluable in these situations - it's just not possible for the majority of patients and local doctors to get all the research when they have to pay for it. Free public access to NIH funded research is really important!

03/17/2008 at 10:32:58 AM Kennison Rebecca M.A. Columbia University New York NY US Representative NIH Funding Recipient Organization
Comment Topic: Columbia University implementation of the Public Access Policy
Comment: Columbia University welcomes the opportunity to implement the NIH Public Access Policy. We believe that the policy is consistent with the general educational and research objectives of the university and the broader research community and of the right of the public to access government-supported research. The NIH policy has also provided an important occasion for offices within the university to continue to collaborate and coordinate policy and procedures on the importance of managing our research output and ultimately making it more readily available to the public that has supported both the research and our researchers.

We do have concerns about some of the challenges to implementation raised by the submission and compliance process as currently in place. Our authors, as is true throughout the academy, submit directly to journals without going through any university office, making tracking full and complete compliance difficult. Foremost among logistical concerns is with the required author approval of the XML-tagged version before the author can obtain a PMCID number. We look forward to working with NIH and the research community to resolving these challenges and developing an increasingly smooth process for implementation of this policy.

03/17/2008 at 10:27:38 AM Norkus Dennis Bach of Science ACOR Mishawaka IN US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to Journal Articles
Comment: As a husband of a cancer survivor member of two of ACOR's web sites...Bladder Cancer Web Cafe and Colon Cancer, I am very interested in the free information that is available to me through public access to Journal Articles.

By having this available, it keeps me informed of what is happening out in the world of cancer research so I as a care giver can asset the medical care available.

Needless to say that all medical costs are extreme and to add another fee on top of this for valuable information would be another financial burden. Thank You.

03/17/2008 at 10:12:09 AM Abrishami Lori M.U.R.P. Member of the public Los Angeles CA US Other Member of the Public
Comment Topic: Medical Articles and Research Availability
Comment: All medical research and papers that have been funded by even one cent of taxpayer funds, either directly or indirectly, must be made available to all members of the public on the NIH website.

03/17/2008 at 10:07:12 AM Gilbreath Glenn Ph.D. Virginia Commonwealth University Midlothian VA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access
Comment: The transfer of information to patients and practitioners is hindered by the additional road block of expensive access to articles that are supported by tax funded research. The patients are being taxed twice and their health suffers because it takes 10 to 15 years before new procedures proven by research are widely put into practice. Free access can shorten this time by removing one barrier to the process.

03/17/2008 at 09:59:00 AM Naveira Romina MS Publishing, NYU Association of American Publishers (Professional and Scholarly Division) New York New York US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Good Faith Implementation
Comment: NIH must agree to adopt and develop certain best practices to ensure that the public access policy meets and adheres to its stated objectives.

1. Since PMC will compete with publishers’ own websites as more PMC content overlaps with content on publishers’ sites, how will NIH maintain the primacy of the publishers’ websites and ensure that the manuscript on PMC does not displace or act as a substitute for the final published journal article, i.e., the authoritative version of record, which resides on a publisher’s site? Will NIH work with publishers to ensure that readers know and are directed to where the final published versions can be obtained?

2. Many publishers provide free access to authors’ manuscripts or final published articles twelve months after publication or even sooner. NIH does not consider this access compliant with the NIH policy. Would NIH consider including author manuscripts only in its administrative database and archive, while providing public access via display only through publisher sites? If not, what is the rationale for maintaining an unedited manuscript for public consumption if the final, authoritative version has been made available for free access on the publisher’s site?

3. What will NIH do in cases of noncompliance with its policy guidelines? What action will be taken when a grantee’s article is published, but NIH is not provided with the peer-reviewed manuscript? What actions will be taken against noncompliant grantees when they apply for future NIH grants?

4. How does NIH anticipate securing and sustaining a source of funding to maintain the database of articles that will accumulate over time, including costs to migrate to new platforms? Under the new policy, US taxpayers will be funding public access to science to any person anywhere in the world with Internet access. Has the NIH considered the ramifications of providing such international access, and how this might affect national security or other US government trade regulations?

We look forward to the public meeting at NIH on March 20 and the upcoming RFI proceedings, but considering the far-reaching implications of the substantial change in the NIH public access policy, we urge HHS and NIH to do a full Notice and Comment Rulemaking. We believe that the public and the publishing community should be given an opportunity to comment on the content of the new policy before it goes into effect. We urge HHS and NIH to hold off on implementing the policy until after the Notice and Comment proceedings have been completed.

We also look forward to a more formal process for working closely with NIH to implement the new public access policy.

03/17/2008 at 09:57:07 AM Waldrop Tony PhD University of North Carolina at Chapel Hill Chapel Hill NC US Representative NIH Funding Recipient Organization
Comment Topic: Public Access
Comment:  Submitted jointly by the Provost, Vice Chancellor for Research and Campus Library Directors. We write in very strong support of the new NIH public access requirement and its implementation in April. This requirement will hasten the availability of biomedical research results from NIH grantees at UNC Chapel Hill and from leading scientists elsewhere. Because we have anticipated this legislation for some time, we are prepared to support and assist with its implementation at our institution. Deans, Associate Deans for Research, NIH funded researchers, and research administration staff have been informed of the new requirement and what assistance is available from UNC. Campus libraries have created a web site with helpful resources and scheduled classes and information sessions with faculty, deans and research administrators. We are requesting that our authors and principal investigators alert publishers of their intent to comply with the NIH policy at the time they submit their manuscripts, and to insert appropriate copyright language in their publishers’ agreements if it is needed when manuscripts are accepted for publication. Our internal grant processing systems have been altered to remind authors and principal investigators of the requirements of this policy.

03/17/2008 at 09:45:35 AM Naveira Romina MS Publishing, NYU Association of American Publishers (Professional and Scholarly Division) New York New York US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Proper Protection of Copyright
Comment: NIH must develop specific safeguards to ensure that day-to-day implementation of the public access policy respects the basic principles embodied in copyright and not undermine these rights that provide incentives for publishers to invest in the peer-reviewing, publishing, distribution, and archiving of scientific articles.

1. How will NIH ensure that any revisions to copyrighted materials such as reformatting, enhancing, linking, or otherwise changing the articles do not undermine the rights, added value and interests referred to above?

2. How will the policy protect against distribution of copyrighted materials to other sites around the world besides PubMed Central?

3. How will NIH address possible objections or concerns from copyright owners who do not assent to the public posting of their material on PubMed Central and its related international sites, or who have concerns about the enforcement of copyright located on and delivered from those sites?

4. Publishers recoup the expense of peer review, production, and distribution by several means, including commercial sales. When copyrighted articles are freely available online, their commercial value can be eroded. How will NIH ensure that the policy will protect publishers’ intellectual property assets, retaining the commercial value of the copyrighted articles?

5. Recognizing publishers' copyright and investments in peer review and publishing, does NIH plan to supplement its grant funds to sponsor public access to the manuscripts? If yes, how will such funds be identified in the grant, and what has NIH budgeted per year for such incremental costs?

6. How will NIH ensure that the articles on PubMed Central meet with publisher requirements, such as the access-control period, and that the policy actually applies to the articles that NIH is posting?

7. How will NIH prevent piracy of the articles from PubMed? Will NIH monitor for mass downloading of posted articles by single users? How will NIH work with publishers in the event that copyrighted articles are pirated from PubMed Central? If NIH finds that articles have been subject to piracy, how will NIH notify the publisher and provide any information NIH may have about the infringer? Will NIH provide for review and revision of the public access policy if piracy occurs from PubMed Central or the other international repositories connected with PMC?

8. How will NIH ensure that the articles on PMC maintain the publisher’s branding, and if applicable, the corresponding disclaimers and notices so that publishers can preserve their brand assets and manage their liability appropriately?

03/17/2008 at 09:44:23 AM Smith Katharine B.A. U.S. taxpayer and cancer advocate Salisbury CT US Other Member of the Public
Comment Topic: Making full taxt of articles available to the public within 12 months
Comment: The world of medicine is changing so quickly and patients need to and are expected to know so much about their own care. Information should be made available to the public, to those fighting cancer themselves or those helping a family member or friend. Time can make all the difference in life or death. Why not make it possible for more people to do research and figure out what might be best for themselves ot the person they are trying to help. Sharing knowledge and information in name of healing and helping makes a lot of sense. Please make these articles available for free to the general public. Thank you.

03/17/2008 at 09:43:49 AM Mann Mike BS, MS Bladder Cancer WebCafe; ACOR Crawfordville FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Div. G Title II, Sect. 218 of PL 110-161, consolidated appropriations act of 2008
Comment:  fully support the policy that implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) which states: "SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be madepublicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law."

Such information can be essential to people seeking information about illnesses that they have recently been diagnosed with. They often need the latest and most up to date research information to have a chance to save their lives.

03/17/2008 at 09:43:19 AM Naveira Romina MS Publishing, NYU Association of American Publishers (Professional and Scholarly Division) New York New York US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Consultation with Publishers
Comment: NIH must ensure that there is a formal and ongoing consultative mechanism between NIH and publishers in which NIH and publishers commit to attaining a balanced implementation of the policy that achieves the public access objectives without negative impact on peer review publishing. The Senate committee report (110-107) to the FY08 LHHS Appropriations bill directed NIH to seek publisher input to ensure that publishers’ copyright protections are maintained under the new policy.

1. How has the policy that NIH announced on January 11, 2008, only weeks after the legislation was signed into law, incorporated publisher input, and how will NIH incorporate the concerns of publishers as it moves forward?

2. We would like to work with NIH toward an effective and fair implementation of this policy. We propose that a task force or advisory group, co-chaired by NIH and publisher-designated representatives, be vested with the requisite authority and responsibility to propose procedures for implementation of the policy mandate.

3. In the NIH Notice of Jan 11, NIH notes that “institutions and investigators are responsible for ensuring that any publishing or copyright agreements concerning submitted articles fully comply with this Policy.” Why would NIH place grantees in the position of negotiating with publishers in the complex world of copyright law? Why not reach agreements with publishers regarding payment for their journal articles, so as to remove from authors the administrative or financial burden of compliance with the policy?

4. The policy will have a negative impact on publishers, many of whom are small professional societies, because with their copyrighted material freely available on PubMed Central, subscription or other article-related revenues may well decline. What is NIH’s plan to track possible harm to publishers, especially small societies? If harm is found, how does NIH plan to remedy it? Does NIH understand the basis for publishers’ concern about such possible harm and its impact on publishers’ willingness to invest in promoting the integrity and widespread availability of the scientific literature?

5. What are NIH expectations of its grantees with regard to ensuring that PMC postings of material will not diminish the rights that are acquired by publishers in that material, the value of the publishers’ added contributions, and the interests of authors?

6. Will NIH provide publishers with detailed and robust PMC usage statistics that will enable them to assess the impact of PMC usage on their subscriptions? It is not clear from current NIH policies and procedures how publishers may obtain detailed and robust PMC usage statistics that will enable them to assess the impact of PMC usage on their own web traffic and subscription or other article-related income.

03/17/2008 at 09:36:41 AM Erwin Nan M.A. Cancer Survivor Lincroft NJ US Other
Comment Topic: Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008)
Comment: I am very much in favor of a bill was passed recently that will make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 12 months after they are published. The opposition to this change among journal publishers is inappropriate for publically funded research, which SHOULD be made available to the public on a timely basis.

I fully support the policy that implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) which states: "SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be madepublicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law."

03/17/2008 at 09:34:41 AM Tarnowski Marilyn Ph.D. Retired Arcadia Florida US Other Member of the Public
Comment Topic: Div. G Title II, Sect. 218 of PL 110-161, consolidated appropriations act of 2008
Comment: I am very much in favor of a bill was passed recently that will make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 12 months after they are published. The opposition to this change among journal publishers is inappropriate for publically funded research, which SHOULD be made available to the public on a timely basis.

I fully support the policy that implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) which states: "SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law."

03/17/2008 at 09:33:25 AM McCauley Jamie N/a Friend Of A Cancer Patient Racine WI US Other Member of the Public
Comment Topic: Make Government funded studies available FREE
Comment: Government funded studies should be FREE to everyone. For the government to be able to fund studies...that money comes from TAXES which each and every one of us pays in one form or another.

03/17/2008 at 09:32:07 AM Fidoten Robert Ph.D. UsTOO International Pittsburgh Pennsylvania US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Availbility of Journal Resources
Comment: To be an informed patient is critical to the treatment and recovery process. Little if any detailed information is provided by the typical medical practice. It is essential that the NIH make its library collection easily and inexpensively available to our society. Please provide free access or veery low cost subscription access to all of the NIH's library files.

03/17/2008 at 09:20:53 AM Lowmaster Kay MSW Us TOO International Pittsburgh PA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to NIH Funded Research
Comment: As the wife of a lung cancer survivor, the daughter of a woman who lost her battle with cancer, an oncology social worker, and a member of the Board of Directors of Us TOO International Prostate Cancer Education & Support Network, I know first-hand that today's patient must be his or her own advocate. Timely access to the latest research, in some cases, can literally mean the difference between life and death. Open access doesn't only benefit patients, however, but physicians and investigators as well. I fully support free public access to publicly funded research especially now in this Internet age when the cost of delivering that information is marginal.

03/17/2008 at 09:11:04 AM Ramsay Wendy BS Bladder Cancer WebCafe; ACOR Graham WA US Other Member of the Public
Comment Topic: Public access to NIH funded research
Comment: To whom it may concern, My life is dependant upon up-to-date research for the treatment of metastatic bladder and upper urinary tract cancer. I am alive today in large part because of the information and research made available through ACOR and the Bladder Cancer WebCafe that I have brought to my doctors. I would like to see immediate public access to NIH research. Staying in front of a cancer that has made little treatment progress over the years demands a proactive patient, constant up-to-date research and the use of innovative treatment methods. We need and have a right to free access to all NIH research as soon as it is available. Thank you.

03/17/2008 at 09:09:56 AM Reeves Robert   Individual taxpayer Woodstock GA US Other Member of the Public
Comment Topic: Public access to NIH-funded studies
Comment: I strongly believe that free public access to NIH-funded cancer studies should be a requirement. Taxpayers pay for these studies, and we should not have to pay again to see the results of them.

03/17/2008 at 09:03:17 AM Tignor Lisa   mother of children with cancer and President of Candlelighters of the DC Metro Area Dumfries VA US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: As a mother of two children who have battled cancer a total of 3 times in 7 years, I strongly urge you to allow taxpayers full access to taxpayer funded research. Although there is limited information available on the internet, it is often just an abstract or outdated research. Only with full access to the latest research can we make an informed decision on how best to proceed to save our child's life. That is the most difficult decision a parent can make.

03/17/2008 at 09:02:19 AM Burke Shanon   Parent of cancer survivor Eustis FL US Other Member of the Public
Comment Topic: Public access policy
Comment: As the mother of a pediatric cancer survivor, I often find myself in search of information regarding late effects of cancer treatment. This has only become a more focused field of study in recent years, so scientific journals are my primary source of information. Unfortunately, the fees they charge to access the full-text of these articles is prohibitive. To be of help to my child, I need access to information. It is unfair to charge a fee when my tax dollars are used to provide funds to said research.

Sincerely, Shanon M. Burke

03/17/2008 at 08:48:50 AM Hyman Steven MD, MA Harvard University, Provost Cambridge MA US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: The NIH Public Access Policy is an important and laudatory one. Harvard University supports the policy and its underlying ideals. The details of our own implementation of the requisite rights retention are still being worked out, and it will certainly require cooperation between grantees and publishers. Nonetheless, we believe any challenges that the policy presents can be surmounted, and applaud the NIH for its pursuit of the broadest access to scientific knowledge.

03/17/2008 at 08:38:29 AM Lastinger Joseph N/A Self grapevine TX US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: As a parent of a child with cancer, I find it extremely frustrating that I cannot completely research my child's condition in order to better understand and to make good decisions for her. I cannot afford the thousands of dollars it would cost. I find it maddening when I cannot access an article that was essentially paid for already by me and the rest of our citizens that pay taxes.

Government funded research is extraordinarily important. But tell your researchers that they don't have to publish in the NEJM, Science, or other journals that are fighting to make a buck here.

PLEASE MAKE ALL ARTICLES RESULTING FROM NIH FUNDED RESEARCH AVAILABLE IMMEDIATELY AND ALSO MAKE IT MANDATORY THAT IT BE EASY FOR PARENTS OR PATIENTS DOING INTERNET RESEARCH TO FIND THE FREE VERSIONS RATHER THAN BE SUCKERED INTO PAYING.

THANKS

03/17/2008 at 08:36:27 AM Sprouse Gene Ph.D. American Physical Society Ridge NY US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: NIH mandate jeopardizes society publishers
Comment: The American Physical Society (APS) publishes articles primarily in basic physics, but does have some papers from scientists supported by NIH in the fields of biological physics. As a Society publisher, we are a not-for-profit organization that provides publishing services to the international community of physicists at very low cost. Our copyright statement has for many years allowed the specific form of open access that NIH is now mandating from every author. In our case, due at least in part to the long history, large size, and central position of APS journals in physics publication, our journals have so far remained strong, but we are particularly concerned that for smaller publishers and for some sub-disciplines the NIH mandate will be a significant problem, and for this reason, while supporting the goal of open access, we oppose the imposition of the mandate in its current form. We also worry that the NIH policy was implemented with essentially no opportunity for Society publishers such as APS, and other publishers to comment on its ramifications. Future unilateral steps by NIH and other government agencies could jeopardize the delicate balance between open access for authors and the financial support of publishers that provide important services to the scientific community, such as validation with high quality peer review, copy editing, and electronic composition and reference linking. The NIH policies appear to have targeted the practices of a few commercial publishers, but without adequate consideration of the consequences for not-for-profit publishers and other low cost publishers. We advocate a more collaborative process that includes input from all of the different stake-holders in the communication of science, so that we can preserve the scientific journals that have been the stalwarts of validation and preservation of science for centuries.

03/17/2008 at 08:33:59 AM Smith William BA Private Citizen Greensboro nc US Other Member of the Public
Comment Topic: Free Access to Reports funded by NIH
Comment: I want to confirm my support for the bill passed recently making it mandatory for articles published as a result of NIH funded research to be made available to the public through the National Liabrary of Medicine. It is only through a wider distribution path that patients, care-givers as well as the medical profession can gain the latest infomation on diseases/conditions that affect treatment whether it is for prophilactic, curative or maintenance of disease. My wife, diagnosed with Bronchoalveolar Adenocarcinoma, has brought information to her Oncologist - unknown to him- that affected our approach to the treatment of her diagnosis. It is vital, imperative that free access continue to be given NIH funded research. Bill Smith

03/17/2008 at 08:29:33 AM Mono Wendy   none NY NY US Other Member of the Public
Comment Topic: NIH funded research should be available to the public
Comment: Taxpayer funded research should be available free of charge to the public.

03/17/2008 at 08:26:48 AM Kilburn Wendy BS in Psychology Parent of cancer patient Belton Tx United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Published Results of Cancer Studies
Comment: I would like to have free access to the results of cancer studies. My 2 year old son has leukemia, and it is important that I am aware of findings of studies that may help my son beat this. Paying for these results is difficult for those of us who are in the fight against cancer due to the high cost of medical care. We should not have to choose between finding the latest study results and buying medicines to save those that we love. Thank you for your time.

03/17/2008 at 08:16:25 AM Butler Crilly MA Bladder Cancer Web Cafe Davis CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Public Access to NIH Publications
Comment: The bulk of the revenue stream associated with these medical publications is realized within the first few months of their release. After that, the benefit to the public of providing this information to everyone for free would be astonishing. Please change your policy to permit this. For some of us, it may be a matter of life or death. Thank you!

03/17/2008 at 08:10:46 AM Toussaint Patricia   NBlast Lansdale PA US Other Member of the Public
Comment Topic: NIH Funded Research Articles - available at no charge
Comment: I think it would be extremely helpful to be able to view full text articles online at no charge. It is very frustrating to do research online and find articles on exactly what you are looking for, but to find that you need a subscription or pay a fee. I agree that all NIH funded research articles should be available at no charge. Thank you!

03/17/2008 at 08:10:06 AM Abate Laura MSLS The George Washington University Washington DC US Representative NIH Funding Recipient Organization
Comment Topic: Public access for public benefit
Comment: Access to information is crucial for healthcare providers and researchers both in the U.S. and worldwide. U.S. citizens have long funded research to which they had little to no access. The new NIH Public Access policy will provide the public access to research results, and will allow healthcare providers and researchers worldwide to access these results with an eye toward improving healthcare and advancing science for everyone's benefit.

03/17/2008 at 07:36:38 AM Borcich Holly   ACOR list Rockford IL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Medical Journal Access
Comment: As a patient afflicted with a disease for which there is limited treatment, I would state access to current articles may be pivotal in my survival. I do not believe in having access to those being limited by my ability to fork out as much as $60 per article. When you have exhausted known medical protocol it is likely a patient will bring info to the physician - for the love of God - make it available. Thank you.

03/17/2008 at 07:22:15 AM Norkus Barbara RN ACOR Mishawaka IN United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to Journal Articles
Comment: As a cancer survivor member of two of ACOR's fine sites...Bladder Cancer Web Cafe and Colon Cancer,I am very interested in the free information that is provided to me through public access to Journal Articles.

By having this available, it keeps me informed of the latest information so I can be a patient who is an asset in my medical care.

Medical care costs are extreme...to add a fee for this valuable information is unreasonable in my estimation. Thank you for the opportunity to comment.

03/17/2008 at 07:07:35 AM Salisbury Paul Ph.D York College, City University of New York Jamaica NY US Other Member of the Public
Comment Topic: Public Access to NIH Reports
Comment: The public needs open, user-friendly access to all NIH reports and publications. Information is the difference between life and death for so many cancer patients -- as well as all others with critical and serious, chronic diseases. It's the NIH budget but it is public tax dollars.

03/17/2008 at 06:58:27 AM Dunn Kathel MSLS NN/LM Middle Atlantic Region New York NY US Other
Comment Topic: NIH Public Access policy
Comment: I strongly support the NIH Public Access Policy and with its implementation, the greater availability of taxpayer-supported scientific research to researchers and members of the public. Scientific researchers, in particular, will benefit from the greater public accessibility of their work, and the subsequent ability to draw on the work of others to continue their own research.

As the Associate Director of the National Network of Libraries of Medicine, Middle Atlantic Region, I am working in collaboration with one of our resource libraries in offering online courses in the NIH Public Access policy and demonstration of how the policy has been implemented at one library. The course will be available to librarians and researchers throughout four states: New York, New Jersey, Delaware and Pennsylvania. We will promote the availability of tutorials and training materials on the NIH Public Access site.

Thank you for the opportunity to comment on the NIH Public Access policy.

03/17/2008 at 06:35:24 AM Quimby Bruce MS Materials Science Prostate Cancer Survivor Tucson AZ US Other Member of the Public
Comment Topic: Public access to NIH funded research publications
Comment: As a prostate cancer survivor I am interested in learning about any technical advance relevant to my condition. Much of the publications are blocked and prevent me from reading them. My doctors do not have time to read all the publications, so their knowledge does not advance in a timely manner. I would like to be able to bring relevant advances to their attention.

Since I am a taxpayer, I would like to have access to the information we Americans have funded.

Thank you,

Bruce

03/17/2008 at 06:10:14 AM Click Jennifer JD parent of a child with cancer Springfield VA US Other Member of the Public
Comment Topic: access to research articles
Comment: I believe research articles on all NIH-funded projects should be made available to the public free of charge w/in 12 months of publication. My daughter is a stage iv neuroblastoma patient. Because the survival statistics for stage iv nb are so poor, all patients are treated on clinical trials. As parents, we are asked to make treatment decisions with very little information, including information on treatments that may be available at other hospitals or cancer centers. Like many nb parents, I regularly read journal articles to try to gain a sense of which treatments are working, which aren't, which hold promise for the future. Because cancer in children is rare, and stage iv nb even rarer (about 350 cases/year in the US) parents' ability to research treatments can quite literally mean the difference between life and death. I am certain that had I stayed at our home hospital when my daughter was diagnosed 5 years ago, she would not be alive today. Please give parents access to the weapons they need to save their children's lives; give them access to full text of all articles reporting on NIH-funded research. Thank you.

03/17/2008 at 02:02:23 AM Bouley Donald   ACOR Langhorne PA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH study results
Comment: How can anyone in good conscience want to keep information from people who are fighting for their lives?

03/17/2008 at 01:18:06 AM Taylor A n/a Cancer Patient TRYING TO SURVIVE Salida California US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: PUBLIC ACCESS Government funded Cancer studies
Comment: Having to WAIT out months or years for the results of cancer studies to trickle down to 'patient level' adversely effects the window of survival for those of who are fighting for our lives in the battle against cancer. As things currently stand "WE" are the lowest realm of the information Totem Pole, despite the fact that "WE" have the MOST to lose. TIME is of the Essence in our ongoing struggle.

WHY THE LEEWAY OF ONE FULL YEAR??

The published results should be FREELY ACCESSIBLE IMMEDIATELY!

03/17/2008 at 01:12:37 AM Bonser Julia MSSW ACOR Tucson AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free NIH Funded Research Papers
Comment: I think it is vital to have the research papers available for free after they have been published. I tried to find research papers about Transitional Cell Carcinoma in the upper tract and kidneys. I was not able to read the papers I did find as the charge was $60 and up to get a full copy. I felt thwarted in my attempt to find treatment for my husbands bladder cancer that had spread to his kidneys. The support groups such as Bladder Cafe on ACOR and BCAN can only do so much to help patients with bladder cancer and we all need to be able to access current research in whatever illness is being researched.

03/17/2008 at 12:25:16 AM Kelley Brenda   Parent of a child with cancer Los Alamos NM US Other Member of the Public
Comment Topic: Parents, families and caregivers need and deserve info
Comment: The parents, caregivers and family members of patients with cancer need and deserve to have access to publically-funded research, especially if there are studies which address concerns that the patient is experiencing but the oncologist may not have any experience in handling. The opportunity to reduce delays exists which may increase positive outcomes and improved experiences for patients and their caregivers and/or families.

03/17/2008 at 12:20:20 AM Gardner Sara PhD ACOR Lake Oswego OR United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to Taxpayer funded Research
Comment: As a taxpayer, who is funding NIH and its sponsored research, I very strongly feel that we should have access to the results of that research, whether publications or products (ie, drugs) at the lowest possible cost, if any. Companies should not make profits from government sponsored research...Of course they are entitled to received reimburshment for their costs, but not beyond that.

03/16/2008 at 11:56:40 PM Burns Charles   Private Citizen New York NY US Other Member of the Public
Comment Topic: Free access to articles
Comment:  Articles funded by the NIH should be placed in a repository of the NLM and made available to the public free of charge.

03/16/2008 at 11:32:57 PM Driscoll David JD None Vacaville CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Access by the public
Comment: Articles resulting from NIH funded research should be available for public access, free of charge, no more than 12 months after publication. Those who oppose this change are apparently using self-serving motives to protect a free source of articles for their high subscription cost journals, or those which have exorbitant per article charges. The public has paid for these articles and to restrict access is patently an improper restraint on the public's right to know. The harm resulting from restricted timely access impacts directly on patient care and reflects poorly on the motives and dedication of our health care professionals.

03/16/2008 at 11:19:34 PM Barina Charlene BA, MPH (2009) University of Washington, Peace Corps Khovd Khovd Mongolia Other Member of the Public
Comment Topic: Please uphold this bill
Comment: The government's priority should be to protect its citizens' rights to live a free and healthy life. It also should be dedicated to serving the needs of the majority of its citizens. While most of the government does not necessarily operate in this manner, the NIH mandate is a positive step.

Others have mentioned the fact that closing access to this research is in essence causing double payment for citizens. Additionally, the research that is funded by taxpayers has a very concrete benefit - it often relates to improving health. An educated society also tends to allow better decision-making, which in this case could save lives. Please continue to focus on citizens' rights and health by supporting this legislation.

03/16/2008 at 11:14:22 PM Klopping Ruth n/a n/a Patterson Ca. US Other Member of the Public
Comment Topic: Make government funded studies free
Comment: As a cancer patient it is very vital to have free access to government funded health related studies.

03/16/2008 at 11:14:17 PM Klopping Ruth n/a n/a Patterson Ca. US Other Member of the Public
Comment Topic: Make government funded studies free
Comment: As a cancer patient it is very vital to have free access to government funded health related studies.

03/16/2008 at 10:57:13 PM thompson jim ba,jd cancer patient berkeley ca US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to government funded medical research
Comment: It is insane that patients would be charged onerous per article sums for access to taxpayer funded medical activity. Online publishers, who have essentially zero cents incremental charge for an online reading, should not be allowed to plunder the public treasury in this fashion.

Medical libraries are increasingly e-based. Hard copies of recent research are increasingly difficult to find. For the US government to aid in any way in the current ransom system is indefensible.

12 months is well too long. Government funded research should be available to the patient community immediately.

03/16/2008 at 10:42:04 PM W H Yes Citizen Olympia WA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to articles
Comment: NIH;

Yes. I'd like to see complete public access to all NIH funded research articles and studies. I belive it's in the public interest.

Thanks.

HW

03/16/2008 at 09:58:02 PM Martin Dan Chemistry USC/Norris Sunnyvale CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Yes to Public Access
Comment: Hi There, I appreciate the opportunity to provide my opinion on this important issue. As a cancer survivor who has done much research (that has hopefully led to my long-term survival), I can only repeat what others have said, namely, that public access to publicly funded cancer reserarch is the right thing to do.

Please do it.

Regards, Dan Martin

03/16/2008 at 09:51:09 PM Goldsmith Ronald MSW, MA, MSEd cancer survivor Albuquerque NM United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: It is critically important for cancer patients and survivors to have timely access to research findings. Only one journal dealing with leukemia (BLOOD) offers free access of articles by patients, on a request basis, otherwise there would be a $35 charge per article. I participated in a ECOG (Eastern Cooperative Oncology Group) clinical trial of fludarabine in 2001, spending over $5,000 above health insurance to participate. Yet, I cannot access the trial's findings, because apparently there is no requirement for publication. Clinical articles need to be available as soon as possible, not "up to 12 months." Informed patients need this information, as do their oncologists. Thank you for your consideration.

03/16/2008 at 09:36:54 PM Finkel Muriel   Amyloidosis Support Groups Inc. Wood Dale IL US Other
Comment Topic: Making Articles Available
Comment: Knowledge is power.

One cannot react without knowing what is going on, In the world of rare disease, it is vital that we know what and when things are happening. Time is not on our side.

Thank you for this opportunity,

Muriel Finkel President Amyloidosis Support Groups Inc. ASG www.amyloidosissupport.com Toll Free 866-404-7539 Organization Member of NORD www.rarediseases.org

03/16/2008 at 09:06:17 PM Jardine Douglas/Sandy Ph.D consumers Phoenix AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Making articles available3
Comment: Please urgently consider making medical articles available online and in libraries as soon after publication as possible. This needs to be done free of charge. We as consumers who are coping with life threatening illnesses need to have free and easy access to the latest information. This information is often not shared by our individual physicians. Our very lives depend on your making this accessible . Thank you.

Respectfully, Douglas Jardine, Ph.D, MFT (prostate cancer survivor) Sandy Jardine, M.S. LPC (wife) We are both relationship therapists who counsel individuals and couples with life-threatening illnesses.

03/16/2008 at 08:52:39 PM Parker Rod BS, MBA None Owensboro Kentucky US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Reports and findings should be available
Comment: As a 54 year old prostate cancer survivor who has had an radical retropublic prostatectomy with 35 Tomo salvage radiation treatments with a Gleason score of (4+5). I also have been on over two years of Zoladex implants to keep my PCa at bay. I am constantly reading developing studies as at some time in the future my cancer will become independent of testosterone. I firmly believe that the NIH studies, which are financed by taxpayers monies, should be available to us when published, not after 12 months. Some of us are helping Physicians to be better educated and many patients actually read these studies before Physicians do.

03/16/2008 at 08:49:56 PM Wittenberg Sidney OD Retired Mission Viejo CA US Other
Comment Topic: Free use of NIH funded research publications
Comment: Although currently retired, a have been a co-principal investigator on an NIH funded project. I heartily support the free use of the results of such work. The very purpose of the funding is the advancement of heath care. The latter is best accomplished by the ready accessibility of that information to all. It would be unconscionable to allow any limitation on the public’s access to it, especially when the public has paid for that research.

03/16/2008 at 08:30:20 PM Senecal Eric Bachelor of Arts ACKC Olathe KS US Other Member of the Public
Comment Topic: Free Access to Medical Journal Works
Comment: I want to voice my strong opinion that indeed all medical reports on Trial results should be made free to the public. As a stage 4 RCC survivor I am constantly wanting more information on new treatment possibilities. Plus, I believe that since most of these trials occur with tax payer funds, the public should have access to that which their hard earned tax dollars have helped make possible.

03/16/2008 at 08:20:30 PM Andreae Tiffany Bachelor Taxpayor - Cancer Advocate N Barrington IL US Other Member of the Public
Comment Topic: Journal Article Publication
Comment: Providing full access to full articles in a timely fashion would be an invaluable asset. For those of us working to help friends and family fight cancer, being able to contribute to the Doctors' research is a tremendous asset. We have made so many strides in our country that it is a shame not to openly and easily share the information. Thank you for your time and attention to this matter.

03/16/2008 at 08:15:57 PM Louis Jennifer BA Candlelighters Childhood Cancer Foundation Nashville TN US Other Member of the Public
Comment Topic: View full text articles at no charge
Comment: As the NIH is supported by citizen's tax payments, all citizens should be able to view, at no charge, full text articles resulting from research that has been funded by the NIH .

03/16/2008 at 08:10:38 PM Frankel Carl A.B. J.D. Us TOO International Pittsburgh PA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to NIH Studies
Comment: I write as a prostate and oral cancer patient as well as the husband of a leukemia patient. In addition, in my capacity as an Us TOO Board member, I frequently serve as a source for information and support to my fellow prostate cancer patients. I regularly read the Pub Med abstracts relating to these diseases as well as other publications believing that a well informed patient is better able to deal with the difficult decisions we all have to make.

It is clearly in our interest, in the interest of scientists and the public at large that access be granted access to the full articles reporting on taxpayer supported studies at the earliest possible date. What conceivable public purpose is served by withholding this information?

03/16/2008 at 08:05:32 PM Wilkinson Kenneth BA Cancer Survivor Alexandria Virginia US Other
Comment Topic: Public Access
Comment: As a cancer patient with severe reactions to normal courses of treatment and the complication of a bleeding disorder, research on the internet has been critical to diagnosing the effects of my reactions and identifying ways treating them. The internet has been - in addition to having numerous consults - critical in identifying and evaluating alternate courses of treatment. NIH has been a great resource for me for treatment (as a patient) and research. Access to recent study results continues to be a major problem. Based on my past experiences, I am reluctant to merely submit to new courses of treatment - even after consulting with leading Dr's - with without researching them and gaining confidence in their efficacy - to include an in depth understanding of their side effects. My experience is that I find myself relying of studies conducted outside of the United States or having to evaluate treatment alternatives with dated material. Bottom-line: Public access to NIH funded studies will provide an important resource.

03/16/2008 at 07:44:33 PM Keating Julie BA Cancer Survivor Torrington Connecticut US Other Member of the Public
Comment Topic: Free Access
Comment: Taxpayers should be allowed free and full access to NIH research. Information should be made available as soon as possible.

03/16/2008 at 07:37:01 PM Mount Steve Ph.D. University of Maryland College Park MD US Other
Comment Topic: Support for public access from a scientist.
Comment: I would like to voice my support for public access, speaking as a scientist who frequently coauthors manuscripts with some NIH support. As a scientist, I share with the public an interest in making NIH funded research available to everyone with an interest in the work. I want people to be able to read my work!

03/16/2008 at 07:29:33 PM Keating Catherine AB US Taxpayer - lung cancer advocate Brooklyn NY US Other Member of the Public
Comment Topic: Free Access to Journals
Comment: It's important to people who need only limited access to articles to be able to access them easily and free. Especially for non-academics who are desperately trying to learn as much as possible about their disease as quickly as possible. Cancer patients and their caregivers do not need full subscriptions, but nor do they need to jump through hoops to get a simple article.

Please make it easy for those of us trying to make a difference.

03/16/2008 at 07:26:06 PM Ward Rick BA Cancer survivor and advocate San Antonio TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to NIH funded research
Comment: If possible, I encourage NIH to set as part of its policy to implement Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) a much shorter time frame than "up to 12 months" for free access to NIH funded research. As the funding party, NIH should be able to place conditions on the funding, such as free immediate availability of the full article when published. At present PubMed makes available only the abstracts while the publisher will provide the full article for a fee, so availability isn't at issue.

03/16/2008 at 06:32:06 PM Ward Rick BA Cancer survivor and advocate San Antonio TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to NIH funded research
Comment: Diagnosed with prostate cancer in rural Montana my primary source of my education on my disease was the Internet. All too often I encountered prohibitive (for me) charges for access to full articles. It particularly galled me that the Journal of the NCI was not available except by paying fees. Public law now mandates that NIH funded research be made available free through PubMed. About time!

But Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) is flawed:

". . . made publicly available no later than 12 months after the official date of publication . . . ."

1. There should not be a "no later than 12 months" time period. The articles should be available when published, not only in abstract as they are now on PubMed. The articles are available for a fee at that time now. Our tax dollars have paid for the research and it is illogical under this Act to not make it available as soon as it is published; it is ours. When confronted with any disease time is of the essence.

2. Since there are other taxpayer funding sources for research than NIH, the Act should apply to all taxpayer funded research.

Once more politician have acceded to the pressure of lobbyists.

03/16/2008 at 05:09:01 PM Payton Christiane BA care taker Yamhill OR US Other Member of the Public
Comment Topic: Full text availability
Comment: As one of my mother's advocates and care takers (she has a stage 3C ovarian carcinosarcoma) I think it is very important the the public have access to the full text of all available medical studies. As a tax paying American, there should be no reason that I am not given the opportunity to educate myself to the fullest extent possible about the newest treatments for this rare and aggressive cancer.

03/16/2008 at 04:56:11 PM Munsell Kathie BA,CBIST Cancer survivor..public advocate Kingston New York US Other
Comment Topic: NHI research made public
Comment: As a tax payer, RCC Survivor and medical professional I believe that all research papers funded by tax payers of this country be made available to the interested public free of charge. I find it difficult to believe that this move would affect the high priced professional journals that are currently available by subscription only to those who can financially afford to purchase them.

03/16/2008 at 04:26:25 PM Thomas Karen   Patient, family member of patient and Developmental Specialist for Infants and Toddlers with Special Needs Culloden WV US Other Member of the Public
Comment Topic: NIH funded research
Comment: I heartily agree that NIH funded research should be placed in a repository for public access. As the medical system becomes more complicated and as we learn more about various conditions and diseases-- It becomes vital that the patient learn to be an empowered advocate in their own care. Public information can open conversations between the patient and the doctor that may not have occurred before. Please help us take better care of ourselves and educate ourselves by making NIH funded research publicly available.

03/16/2008 at 04:22:13 PM Marcus Syd M.S. Member of the Public Chicago IL US Other Member of the Public
Comment Topic: Public Policy Access to Research Manuscripts
Comment:  I would like the following policy to be implemented:

The Policy implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) which states:

SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.

03/16/2008 at 04:09:46 PM Granger Pete NA NA Providence RI US Other
Comment Topic: Access to NIH-funded Research
Comment:  Currently, there are fundamental shortcomings in medical research.

1. Authors, in particular publicly funded researchers, are not mandatorily required to (a)express their conclusions in layman's language, and (b) explain the PRACTICAL medical significance of their findings (its context).

2. Whilst publishers should be free to list, collate and monopolize (copyright) their interpretive analysis/commentary on medical research, they should not be free to monopolize distribution of the raw content - unless they fund that research themselves. Appropriating/monopolizing raw, PUBLICLY funded research is a form of theft - particularly whilst there are free, public data distribution networks in place.

3. Publicly funded research is wasteful in the extreme because it is (a) not adequately expressed in laymen's terms (b) it is often not provided in any context (c) it is not adequately analysed and interpreted by another publicly funded umbrella organisation prior to publication (d) it is not adequately distributed to physicians in a manner akin to that of (say) drug companies.

4. Sponsored research that is favorable to the sponsor is published and vigorously promoted, whilst research that is unfavorable is selectively excluded from being published.

5. Very poor integration between US and non-US-based research in regards distribution of knowledge.

All in all, the dissemination of medical research is hopelessly inadequate. The Internet is an ideal medium for this role, however it requires publishers and preferably Government agencies to collate, interpret and distribute the various data in an open-minded and progressive manner - with less of the pessimistic conservatism that currently prevails. Monopolization of raw content by publishers is just part of the problem. Removing the monopoly will force publishers to add REAL value to that content.

Pete Granger

03/16/2008 at 04:07:21 PM Mulliner Kent MA ; MLS retired Rutland OH US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to publicly-funded research
Comment: As a prostate cancer survivor and a citizen interested in my own health and the health of my peers, I feel that access to research is essential and a judicious use of tax dollars. I do not accept that publishers with little investment in the actual research should control access to the outcomes of research.

I think that open access and commercial publishing are compatible (no one would contend that up-to-one-year delay in opening access significantly will impact sales of journals and articles in the science-technology-medicine fields. In fact many publishers currently provide such open access after one year through High Wire based at Stanford University.

03/16/2008 at 03:52:12 PM Richards Kenneth None Stage IV Cancer Survivor Battle Creek MI United States Other Member of the Public
Comment Topic: Public Access
Comment: For many of us, having to wait 12 months to see the information as a layman is a long time, but it is reasonable to expect that it is published and very very reasonable to make it accessible to the public. It's taxpayer money funded and as a taxpayer I would expect to be able to see what I'm paying for or how the grant money has been spent. Transparency is important to all of us and for all of us. If you don't want to make it public, don't ask for our money, and then I also get concerned that you maybe hiding something? Get the information out there sooner rather than later, it may help someone to live their normal expected life span.

03/16/2008 at 03:48:54 PM Piepmeier Jerry MA Cancer Survivor Gladstone MO US Other Member of the Public
Comment Topic: Public Access to NIH funded research
Comment: As a cancer survivor and a US taxpayer, I feel it is extremely important that we have access to NIH funded research results as soon as possible. Some patients do not have 12 months to wait for these results which may prolong their lives or even cure them.

03/16/2008 at 03:46:56 PM Price Dean MPA none Pasadena CA US Other Member of the Public
Comment Topic: NIH funded research reports.
Comment: It is important that reports resulting from NIH-funded research be released to the public.

We have paid for such reports once by funding the NIH with our tax Dollars. We should not be asked to pay for them twice.

Thank You !

03/16/2008 at 03:25:29 PM Shaw Diana JD none Santa Clarita CA US Other Member of the Public
Comment Topic: NIH article availability
Comment: I am writing in support of the recently passed bill that will make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public no later than 12 months after they are published. As a cancer survivor, I try to keep apprised of the latest research and discoveries. To that end I am a member of a chat group. I can't do everything myself, and my group (the Bladder Cancer Web Cafe) has found that one or another person contributes to the whole of our knowledge by eacho of us reading & sharing accessible literature. On several occasions we have simply been unable to access research because the cost is prohibitive. So, for those of us who need the information the most, who want to be pro-active in our own healing, I hope that this bill becomes law.

03/16/2008 at 03:07:38 PM Bertolino Chuck B.S.Finance CLL Patient San Diego CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Keep research available to public
Comment: I need treatment for a life threatening disease and need public access to NIH studies to make decisions regarding courses of treatment. Why have the studies if I can't get access to them?

03/16/2008 at 03:04:08 PM DePouw Carol   Non Hodgkins Lymphoma survivor St. Paul MN US Other Member of the Public
Comment Topic: Public Access Comments to NIH funded research
Comment: As a cancer survivor, as well as a US taxpayer, I feel it is extremely important that we have access to NIH funded research results as soon as possible. Some patients do not have 12 months to wait for these results which may prolong their lives or even cure them.

03/16/2008 at 02:59:09 PM Nangle Rosanne   Spouse of kidney cancer survivor New Orleans LA US Other Member of the Public
Comment Topic: Public should have FREE access to NIH-funded research articles/information
Comment: Our information, our bodies, our decision. We as taxpayers paid for this research to further our health and as such we own the knowledge/information gained through this research, it belongs to us no strings attached. It's ultimately our decision to choose what is best for our bodies and these research articles/information are rightfully ours to aid us in that quest.

03/16/2008 at 02:37:58 PM hamele alice BA patient Farmington Hills MI US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to publicly funded research
Comment: Whether cancer or other patient, caregiver, or simply citizen, publicly funded medical research should be made availabe without charge to all taxpayers.

03/16/2008 at 02:33:02 PM Williamson Phil BS Public Walton Hills OH US Other Member of the Public
Comment Topic: public availability
Comment: The Policy implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008)

The submissions should be made public (on line) within 12 months.

03/16/2008 at 02:02:05 PM Cox Michael   US Too Prostate Cancer Kingston NY US Other Member of the Public
Comment Topic: NIH Public Access
Comment: Please don't reverse the decision to make NIH-funded research available for public viewing. Most of us patients study our individual diseases (prostate cancer in my case) ad infinitum and new research can be vital. I know that when I was making my treatment decision I spent many hours on the PubMed web site because I found the information unbiased and presented with basis in science and investigation results. This was critical in allowing me to choose wisely.

03/16/2008 at 01:48:26 PM Cottingham Dave   Us TOO Prostate Cancer Support Group Brevard NC United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Making NIH-funded research available for public viewing.
Comment: Please don't reverse the decision to make NIH-funded research available for public viewing. It just might save a life. Most of us patients study our individual diseases (prostate cancer in my case) ad infinitum and new research can be vital.

03/16/2008 at 01:45:29 PM Mills Jr Frederick N   International Strategic Cancer Alliance Olympia WA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH funded research articles should be free
Comment: I agree with the effort by NIH to make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 12 months after they are published.

03/16/2008 at 01:42:18 PM Brassil Eileen BS None Mount Prospect IL US Other Member of the Public
Comment Topic: Access to Medical Studies
Comment: As a parent of a child with a rare syndrome, there is very little new information to be found anywhere except medical journal articles, in particular the subspecialty journals such as genetics, neurology, etc.

I am willing to get out the medical dictionary and "translate" these articles on my own if only I could get a copy of them. Looking into a subscription for even one of these journals, I was told it was in the range of $10,000 a year. Why is the public virtually denied the opportunity to read published peer reviewed studies? Why is this so difficult for families with affected children? The doctors don't have time to look up the articles and send to the family but that is the route we are forced to take.

03/16/2008 at 01:39:57 PM Sheridan Wendy   ACOR; Bladder Cancer WebCafe Ocean NJ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to tax funded studies
Comment: The many members of the e-health communities such as ACOR and other public cancer forums stand to benefit this important opportunity for change.

03/16/2008 at 01:34:07 PM Richard Paul   Prostate Cancer patient Minneapolis MN US Other Member of the Public
Comment Topic: Public Access
Comment: The public which funds research should be entitled to immediate access when the results are published. With the rapid pace of new developments in medical research, it is imperative that we as patients stay well informed on the results of recent research. Even one year seems much too long to me.

03/16/2008 at 01:19:53 PM Harpham Elizabethq Associates PCRI Downingtown PA US Other Member of the Public
Comment Topic: Information
Comment: I strongly advocate for research studies to be released within 30 days of completion. Members of our family have prostate cancer and access to research is maddeningly slow.

The FDA is highly politicized and does not always make decisions purely in the patients' interest.

The more informed the public is, the more we can push forward to overcome maddening bureaucratic obstacles.

03/16/2008 at 01:07:32 PM Randlev Peter BSEE Prostate Cancer survivor Rhinebeck New York US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to Documents
Comment: If public money paid for the work, the published output must be made available to the public without an additional fee..

03/16/2008 at 12:56:00 PM Mongin Stan MME PCa survivor Roxbury CT US Other Member of the Public
Comment Topic: Free Access to NIH supported papers
Comment: Please.

03/16/2008 at 12:38:37 PM McCarl Robert Ph.D. Boise State University Boise Idaho US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: patients right to access
Comment: Dear Sir or Madam: I am a sixty year old male who was diagnosed with prostate cancer last year. I am also a professor of sociology and a member of my university's IRB committee. I see daily the need for increased access to research by specialists in fields as wide ranging as history and genetics. Much of this research is funded either directly with federal dollars, or indirectly via subsidies and buyouts for research time at the university. As both a member of the research community and a patient I am acutely aware of the way in which research findings and even areas of inquiry affect people on a daily basis. Under the direction of my urologist, I sought information about research concerning watchful waiting for prostate cancer. I found both anecdotal and empirical evidence to support this approach within the international research record. In some cases, my ability to access journal articles online provided me with information and insights not yet accessible to my doctors. When you have cancer, you are constantly looking for answers. I do not suggest that every patient rely exclusively on the research record. However, I do believe that each patient must have access to up to date information and engage directly in his or her treatment. Federally funded research must be available to the citizen/patient in an understandable and useful format. Restricting research findings to professional outlets alone not only precludes patient education, it denies citizens the right to findings that were arrived at using taxpayer support. Thank you, Robert McCarl, Ph.D.

03/16/2008 at 12:32:40 PM Rusnak Stephanie Ph.D. in Sociology College of DuPage (presently on leave; family reasons) St. Charles IL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Does the U.S. want a class system in access to government-funded research?
Comment: Do U.S. citizens want to encourage a split market system of health information resulting in one stratum of "haves" and another stratum of "have-nots"? It is outrageous for government-funded research to yield findings that are not readily available to the citizenry. Government-funded health-related empirical research findings need to be available to all those who seek such information as they engage in life-altering decision making.

03/16/2008 at 12:30:21 PM Belverud Tara N/A Patient Caregiver Waldorf MD US Other
Comment Topic: FREE access to med journals
Comment: We as American Taxpayers I believe should be able to recieve these studies free of charge. I strongly believe that because the facility is funded by our taxpayers dollars that we have already "paid" for these documents once and shouldn't be required to pay a second time.

03/16/2008 at 12:14:52 PM O'Neill Chris RN, DMin None Eugene OR US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to NIH Funded Research
Comment: Along with clinical specialists, I am successfully managing a chronic disease diagnosed in 2000. I review scientific websites daily to keep up to date on research relevant to my condition. PubMed, Scirus and other specialized clinical websites are bookmarked so that I can easily check the most recent reports. I use the information in discussions with clinicians to revise my care plan as needed. Abstracts are often sufficient for the most relevant published articles. However, sometimes I require more detailed information about the subjects and research parameters, and only details from the full article suffice. On some occasions, the local state-funded university has the necessary journal. But, that is infrequent. I have to either purchase the article at $30 on average per article, or wait for a trip to the Oregon Health Sciences University where the journal article can be accessed and printed at a public access station. The public access is a genuine benefit for those who need the information from publicly funded research. However, the public access station is located 120 miles from my home. Given the increasingly rapid development of research results and the potential to assist in patient care planning, 12 months is excessively long to wait for information developed with public investments. No-cost public access to NIH funded research should be available electronically shortly after publication if not simultaneously. Thank you.

03/16/2008 at 11:53:36 AM YASENCHAK PAUL   p2p Pensacola FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Funded Research Results Articles
Comment: Articles resulting from NIH funded research SHOULD be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 12 months after they are published.

We have already paid for this research through our taxes, we should not have to pay again to see the results of the previously paid for research.

03/16/2008 at 11:44:42 AM Glass Harry MBA None Columbia MD US Other Member of the Public
Comment Topic: Free public access to NIH-funded research findings
Comment: I believe that American taxpayers should be legally empowered with the right to read the results of NIH-funded research as soon as it is published. The public should not be discriminated against by delaying access until 12 months after publication. It is despicable that publishing organizations are able to influence and mold legislation to their liking while the public is left to nibble on the crumbs.

03/16/2008 at 11:35:07 AM Becker Sheldon PhD self Boulder Colorado US Other Member of the Public
Comment Topic: Public Access to NIH-Funded Research
Comment: NIH-funded research is paid for by public money, i.e. the taxes the public pays, so the results of this research, in its entirety, should be made available to the public. We paid for it; it belongs to us.

03/16/2008 at 11:18:53 AM Nyeholt James masters patient Des Plaines IL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: acess to NIH funded reports
Comment: As a cancer patient, and tax payer,I firmly support that all NIH funded research reports are made avaiable, at no charge, to the public who has supported this research.

03/16/2008 at 11:07:24 AM Self Felicia RN Grandmother/legal guardian of child with Rhabdo. Winfield AL United States Other
Comment Topic: Public Access to Research
Comment: As a grandmother and legal guardian of my now 19 month old with a grandson with a rare cancer (Rhabdomyosarcoma), I have found it very beneficial to obtain info to make these very important decisions regarding his care and treatment. It is essential that we be able to obtain this info in a timely manner (3-6 months), this can be a matter of life and death. Since these are our tax dollars, we should not have to purchase this info, which may be an extreme hardship on many people. The cost/effect of cancer on families can and are devestating.Please help our loved ones. Thanks, Felicia Self

03/16/2008 at 10:58:58 AM Byrd Karen BS husband is dying of prostate cancer Redwood City CA US Other Member of the Public
Comment Topic: NIH Journals should be public
Comment: Of course these journals should be made available to the public! Today, a patient needs to be their own advocate and information gatherer. All information relevant to our own health issues needs to be made readily available! Sometimes during a doctor appointment, we (the patient) have more information than our own physician!

03/16/2008 at 10:56:25 AM Peterson Carlton MSEE Retired Alpharetta GA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Prostate Cancer Reports
Comment: I believe it is important that NIH funded reports on prostate cancer studies should be made available to the public. That should be of value both to men trying desperately to find a "better" treatment and to the surprisingly large number of doctors that seem to not understand the difference between treatments that work and those that are inferior.

03/16/2008 at 10:55:27 AM Simmons Laurel MS Cancer Survivor Cambridge MA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to research saves lives
Comment: More and more, patients and their loved ones with complex illnesses turn to PubMed for crucial diagnosis and treatment information, finding their way to the right facilty for the right life-saving care. This benefits both patients and families and the health care system, which is not desgined to bring the full range of medical opinion to bear on an individial patient. While not a perfect solution, anecdotal evidence is mounting: access to the literature can be life-saving for many patients. I strongly support releasing research findings to the people who paid for it. My life was saved by a clinical trial; I want as many as possible to have that same chance.

03/16/2008 at 10:47:24 AM Daggett Richard   Polio Survivors Association Downey CA United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to publically funded research
Comment: Access to research is vital to advocacy organizations. We must have the latest medical information available in order to adequately inform our clients.

03/16/2008 at 10:43:48 AM Himel Justin BSBA ACOR Evanston IL US Other Member of the Public
Comment Topic: Public Access
Comment: To put it briefly, the public should not have to pay twice for the information it's taxes have paidfor. Do the publications pay NIH for the right to initially publish? I DON'T THINK SO!

12 months is a long time to have exclusive rights to something that was free initially. I don't begrudge the publications that period to generate additional revenue but their primary income should be from subscriptions and advertising, not the exclusive right to public documents in perpetuity.

03/16/2008 at 10:43:07 AM dolan john none taxpayer sequim wa US Other Member of the Public
Comment Topic: taxpayer funded research
Comment: Why would the public (read taxpayers) not have access to the reasearch we have funded and payed for with taxes?????

03/16/2008 at 10:25:18 AM Benjamin Fred   Cancer Patient Birmingham AL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Availability of published findings
Comment: The public should have the right to view final reports on research that is paid for by public funds. even twelve months is too long to withhold information that I have paid for.

All grants from NIH should come with the stipulation that final reports will be published for the public to view. If the researchers do not like the strictures placed on publishing, they can pay for it themselves or find other methods to pay the research.

I have no problems with copyright restrictions placed on other uses of the material, but the public still has the right to view the reposrts.

03/16/2008 at 10:20:40 AM Doherty Tom Ph.D. self Wilmington DE US Other Member of the Public
Comment Topic: Public Access to NIH funded research
Comment: Simple solution: We taxpayers who support the research should have free access to the published results within 30 days of publication date. We, who are also patients, have the largest stake in our own well being, and should not have to wait a year for the latest knowledge.

How can we have an intellectual discussion with our physician if only one of us has access to the latest research.

Free access can be accomplished from simply posting a link on the NIH site pointing to the latest research paper connected to each project. This would require the NIH grant recipient to by simply post a copies of their reports on a public accessible web site.

Those researchers who don't accept this stipulation are free to apply for research grants elsewhere.

Those who violate this stipulation should not be eligible to apply for further grants for one year after discovery of non-compliance with publishing policy. I prefer this penalty rather than prematurely ending the current research grant (assuming the research is meeting its original objectives), because often this is academic research where mainly graduate students academic careers would be adversely affected just because their professor did not ensure that grant requirements were fulfilled.

It will take a few years to implement this policy, so NIH should be lenient in the initial stages, as some researchers are not web-savvy. Often there are many people in the organization, especially if it is a university, who are very web-savvy.

It may take a few cases of enforcement a year after implementation of the guideline before everyone accepting funds gets the idea.

...Tom

P.S. I have never applied for an NIH grant.

03/16/2008 at 10:13:50 AM Dickenson Mary Alice B.A. None Angel Fire NM US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Public access to medical research articles
Comment: As the wife of a prostate cancer patient, I find that it is important for us to keep up with research being done in this field. The public should have the right to free access to the published articles as soon as they are published.

03/16/2008 at 09:58:55 AM Harris David B.S. None Silver Spring MD US Other Member of the Public
Comment Topic: Access to Medical Articles
Comment: I am against any action that will make me pay "additional" money to access medical articles for which I have already made contributions in the form of taxes that went to grants, or charitable contributions that fostered many of these studies and reports. Approval to limit public access makes it appear that the government supports those who can afford to pay subscription services for information, instead of the population at large.

03/16/2008 at 09:47:05 AM Marsteller Thomas JD None Dallas TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Intellectual Property Rights
Comment: A dealy of 12 months before the public has free access to intellectual property rights in research funded by the US government is unreasonable.

NIH is a publically funded institution and all intellectual property rights should vest in the US Government at the time the agreement funding the research is executed.

Any deviation from this policy should be on a case by case basis and individally negotiated. The intellectual property rights policy of the NIH should be consistent with that of other US government contracting agencies and protect the rights of natural citizens.

Any delay in full intellectual property rights received on behalf of the citizens on the US unjustly enriches the research entity.

Permitting the entity receiving government funding to retain intellectual property rights is contrary to good business practices and I believe is not the norm in commercial, arms length transactions unless individually negotiated by the parties.

Alternatively, NIH should advance or advocate for a change to the copyright laws of the US exempting intellectual property rights resulting from US government funded research.

Again this policy would only impact government funded research and should be a quid pro quo for such funding. A researcher that does not agree to share their intellectual property rights has the alternative to seek private funding.

03/16/2008 at 09:43:03 AM otterburn hugh B.Vet. Med. self/prostyate cancer patient Oak RIdge Nc US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: pubic access
Comment: I support free public access to the papers after 1 year

Hugh

03/16/2008 at 09:33:36 AM Kagan Ellen   cancer patient NYC NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: information access
Comment: I believe all serious investigative results should be available to cancer patients as soon as it is available.The doctors are not always aware of what is available and unfortunately a great deal of responsibility falls on the sick patient to research new possible treatments. Denying or delaying this information is unjust.

03/16/2008 at 09:30:36 AM Duffy Robert   Private Individual Freeland WA US Other Member of the Public
Comment Topic: Adopt Public Access Policy
Comment: It is only fair and reasonable that research paid for with public funds should be available free to the general public. Having paid once for the research, individuals should not have to pay again via subscriptions or per-article fees to read the results of that research.

03/16/2008 at 09:25:52 AM Peress Nancy   Prostate cancer online community Sault Sainte Marie MI United States Other Member of the Public
Comment Topic: Public Access to journal articles
Comment: Immediate public access is crucial for patient empowerment.

03/16/2008 at 09:11:15 AM Wessler Neal   none Saint Charles MO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Reports
Comment: Make them available immediately. Waiting for a year is just an arbitrary constraint that has no good justification - when it is potentially life saving information.

03/16/2008 at 09:08:39 AM Sprague Kim MSW Mother of child with cancer Ladera Ranch CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: public access to articles
Comment: As the mother of a child with cancer, I have spent many hours researching treatment options. Most pediatric cancer protocols are experimental, and I believe we as parents should have access to research re: treatment and side effects.

Personally, my son's treatment was changed, based on information I found doing research on pub med. That change is now the standard for children with his type of cancer, but he would not have received it if it werent for my access to articles.

The costs of his treatment have nearly put our family in bankruptcy, I dont believe families facing such financial hardships for medical care should have the extra burden of paying for research articles.

As a taxpaying citizen, I believe the pub med articles should all be available for free.

thank you.

03/16/2008 at 08:56:09 AM Layfield Missy PT, ATC Patient Advocate/Parent of Childhood Cancer Survivor Cedar Falls IA US Other Member of the Public
Comment Topic: Public Access to Publicly Funded Research Results
Comment: The focus of publicly funded research should be public reporting of the results of that research, rather than journal publication. Why are our tax dollars providing the medical journals with exclusive access to research results?

As a research oriented patient advocate, I struggle daily to access full articles, both new and old. I am not associated with a university, so I have to scramble and find someone who will provide the article to me.

I would like to see a mandate that any research funded in full or part by NIH or any tax-funded entity, be required to provide a detailed research results article within 6 months of the completion of that research. There should be no waiting period while the journal decides to publish or not, and certainly no waiting period after journal publication. We as the funders of that research, should have access to it first.

03/16/2008 at 08:14:19 AM Prescott Anne   mother to child with cancer Oneonta NY US Other Member of the Public
Comment Topic: Access to published journal articles
Comment: As a mother of a child with cancer I frequently searched for articles that might have provided cutting edge information only to find relevant abstracts and not be able to view articles. Journal access is critical to the lives of many and should not be based on ability to pay, especially when patients are in the middle of the finacial burden of medical care, and the emotional burden of survival. Isn't the purpose of research to supply answers? the people who are searching for these articles are the people who created a need for the research in the first place, the people who are funding this research, and the people who desparately need the answers offered. please help us. who knows if one of the articles i could not access would have helped my sweet girl?

03/16/2008 at 08:05:21 AM Malone Frances   CLL Support Group Suquamish WA US Other
Comment Topic: Public Access Policy
Comment:  The Policy implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008)

The quickest possible free access to articles referring to research and new breakthroughs is of vital importance to those of us suffering from diseases for which there are no cure, or can carry with them unusual risks for other diseases. It was only because a physician friend was able to access articles which I couldn't that I learned that people diagnosed with Chronic Lymphocytic Leukemia are more prone to skin cancer. My personal physician never mentioned this because she said she wasn't aware of that fact. At my request she referred me to a dermatologist who found two cancerous moles. Even he was shocked because I am not fair skinned, have brown eyes and have lived most of my life in WA state where there is not an overabundance of sunshine. Members of the CLL ACOR group can tell numerous similar stories. Information regarding publicly funded research should be made available without charge as quickly as is reasonably possible.

03/16/2008 at 07:10:51 AM Cooper Vivian   Cancer Patient Ocean Isle Beach NC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access To Information
Comment: As one of hundreds of thousands of cancer patients in this country, I sincerely request that we not have to pay for access to valuable, government-funded information that may help us proactively partner with our healthcare professionals in an effort to save our lives.

03/16/2008 at 06:47:02 AM Brown Helen Master of Laws Caregiver to cancer patients Sydney NSW Australia Other Member of the Public
Comment Topic: Access to journal articles
Comment: US taxpayers should have free access to published research their tax dollars have funded (NIH funded research). Personally, as a past caregiver to 2 cancer patients, I benefited from accessing authoritative free of charge peer-reviewed, government-funded scientific that helped me partner with healthcare professionals so as to better care for my family members. Free access to high quality materiasl can only help this. As a lawyer in an Australian university workind directly with NIH-funded researchers I see every day the difficulties of managing the cost of access to information. Free access would help manage the costs of literature reviews that underpin every development in the area of health.

03/16/2008 at 12:28:03 AM Bishop Pamela AS Lung Cancer Survivor Xenia OH United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access to Medical Research
Comment: It is a hardship for non-professionals to get these articles. As taxpayers we pay for this research. Access should be free for the written results.

03/15/2008 at 11:59:38 PM Morford Jean BA cancer patient Morristown AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH funded articles
Comment: I sincerely hope that NIH funded articles will be offered to the public at no charge. It would help all cancer patients to be informed and educated about their illness. When I was diagnosed in 1991, it was extremely difficult to obtain first-hand information about my illness. In order to be responsible for making my own treatment decisions, it is extremely important that I be able to read articles myself. Due to my illness, my income has become very limited. I cannot afford to pay for information and I know that is true for many other patients. I appreciate all that anyone can do to help me make informed decisions. Thank you.

03/15/2008 at 11:50:51 PM Klutenkamper Mary Ann BSN RN patient Lakeville MN US Other
Comment Topic: cancer survivor
Comment: With the current cost, patients obtaining the literature they need to investigate the best treatments for their disease is truly a heartship. THe cost of copays and out of pocket expenses that medical treatments cost patients is beyond belief. Providing patients and their families with free access to published literature would greatly help the cancer patient in their fight against the disease. Patients need to be their own advocates today more then ever before and without being educated regarding treatment and outcomes is a great diservice to patients who often have to guide their care to continue the fight.

Thank you, Mary Ann Klutenkamper survivor renal cell carcinoma 5/2001 survivor Lung cancer 11/2007

03/15/2008 at 11:02:43 PM Grower Colette BSN State of Alaska Anchroage Alaska US Other
Comment Topic: Access to Medical Information
Comment: The public is entitled to access to all information. We do not need big secrets in the Medical Profession.

03/15/2008 at 10:20:27 PM Rowland John   Leukemia patient Weaverville NC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Reasonableness Criteria
Comment: Publicly funded research needs to be widely available within a reasonable time; that is the rationale for public funding research in the first place. Public funding is only appropriate for activities or research that will enhance the public welfare. In the case of medical research, restricting access is contrary to the purpose of the funding and will harm the patient population from whom in many cases the experimental subjects were drawn.

It is entirely reasonable to assume that very few patients would volunteer for clinical trials if the result of those trials were to be withheld from them and their fellow patients.

JR

03/15/2008 at 10:20:06 PM Peckerman Arnold PhD n/a Bloomfield NJ US Other Member of the Public
Comment Topic: articles resulting from NIH funded research
Comment: It is wrong that the publishers have been allowed for so long to charge the public for articles generated by publicly-funded studies. It's a form of corporate welfare, plain and simple, and it's a high time for it to be stopped.

03/15/2008 at 10:05:42 PM Feraru Rob   patient Gualala CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: open access
Comment: Please make all the NIH funded research available in FULL FORM to the public as soon as possible after the research is published, but in no event later than 12 months. Our lives depend on it.

03/15/2008 at 09:41:39 PM DICTOR CARY JD NONE SAN LEANDRO CA US Other Member of the Public
Comment Topic: PUBLIC ACCESS
Comment: I STRONGLY SUPPORT PUBLIC ACCESS TO HEALTH INFORMATION, AND ESP PUBLICLY FUNDED OR SUPPORTED RESEARCH.

03/15/2008 at 09:39:06 PM Svatos Jamie   Aunt to amazing 5 year old fighting a rare brain cancer Omaha NE US Other
Comment Topic: Please publish full-text articles online for free
Comment: As a concerned family member of a young child with a rare and agressive brain tumor, I think all research funded by the NIH should be available online as full text articles at no charge.

03/15/2008 at 09:33:53 PM Peterson John BS Medistem Laboratories, Inc. Kansaas City MO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH funded papers
Comment: It is extremely important that new dat, publicatios, papers, results of NIH funded work be available to the public. 12 months seems a long time for protection but if that is the number, I support it. Please expedite the availability of this information. We patients often need it badly.

Thanks.

John Peterson

03/15/2008 at 09:32:40 PM Meyer Alan M.S. Cancer survivor Randallstown MD US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to NIH-Funded Research
Comment: When research has been paid for, or partially paid for, by public funds, it seems only right that the public be allowed to read the results of that research. I understand that private journal publishers wish to recover costs and make a profit by charging fees for journals, but the real scientific work, and the real expense of the research enterprise, is in the research itself, not the publishing. If the hard and expensive part of the research is paid for with public money, the results should be available to the public and should not be appropriated by the publishers.

The proposal to allow private publishers the exclusive right to sell articles for one year after publication seems to me to offer reasonable protection for the publishers involved. The proposal does not completely disregard the publishers, but it does recognize that the public has a right to see the results that they paid to produce.

I believe that there is also a compelling public interest in providing more and better access to medical research. The purpose of this research, and the reason that the government funds it, is to advance medical knowledge for the entire community. Providing free access to this research will benefit all of those who have the knowledge to read it. It will benefit private citizens, students, and doctors in the U.S. who have limited or no access to medical journals. It will also benefit large numbers of students, doctors, and researchers around the world who do not have the hard cash needed to pay for journal subscriptions.

03/15/2008 at 09:15:08 PM Freidus-Flagg Alberta Joy MA US taxpayer Honolulu HI United States Other Member of the Public
Comment Topic: Public Access to NIH-Funded Research
Comment: Please support the recently-passed bill that will make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public, no later than 12 months after they are published. It is essential that this information be accessible.

03/15/2008 at 07:55:08 PM Greer Lisa J.D. Parent of Medically Fragile Child w/ Rare Genetic condition . Northridge California US Other Member of the Public
Comment Topic: Open/FreeAccess to Government Funded Medical Research
Comment: I am commenting in my capacity of as a taxpayer and the mother of a ten-year old little boy with the rare condition known as Kabuki Make-up Syndrome. Given the extent to which our son' genetic disease requires us to collaborate with his medical treatment team in rendering frequent and complex medical decisions, we are constantly seeking access to medical research data bases. However, as lay people who are unaffilliated with a university or other entity that maintains costly subscriptions to "for profit" medical research data bases, we are more often than not hamstrung in these efforts. From a policy perspective, it strikes me as nothing but beneficial to give the community of special needs parents/caregivers open access to the medical/scientific research that our tax dollars have funded. It will lead to better and more efficient decision-making by such individuals, and lead to a more transparent relationship between parents of chronically ill pediatric patients and the child's medical treatment team. It is important that parents such as us can, through self education, equalize the almost universal disparity of medical decision-making power that arises from a lay parents' inability to access data critical to render informed consent for proposed medical interventions.

03/15/2008 at 07:51:41 PM Odom James BS Elect. Eng. Cancer Survivor Hallsville MO US Other
Comment Topic: Access
Comment: It is my belief that nothing but good can come of having free public access to results of public funded research. As a cancer survivor that is still under treatment, it is my observation that knowledge accessible to the patient at no cost can be very important in dealing with the disease, the medical profession, and deciding on treatment options.

03/15/2008 at 07:04:36 PM Ruane Peter MD Private Practice Los Angeles CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Sponsored studies Public access
Comment: I am in favor of the Public Access Policy that ensures that the public has access to the published results of NIH funded research. It requires that scentists to submit journal articles that arise from NIH funds to the digital archive PubMed Central.

Specifically, currently the information that comes easily online to patients is through Pharma supported organizations ( Medscape, POZ, ViralED, Urotoday etc) and has an inherent bias.

03/15/2008 at 06:42:55 PM Faitek Judy MS Hemophilia Association of San Diego San Diego California US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Paying for journal articles
Comment: Please allow people who are sick access to journal articles without having to pay for them. People who are dealing with sickness have enough to worry about and pay for. Please allow us to research our diseases through these journal articles. Thank you.

03/15/2008 at 05:40:24 PM Scherrer Wendy B.S., MEd Mantle Cell Lymphoma Survivor/Patient Bellingham WA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access and NIH information
Comment: As a lymphoma patient in a rural area of northwest Washington State, I rely on websites carrying the latest scientific research findings on my rare of non-Hodgkins mantle cell lymphoma. I strongly belief that the Director of the National Institutes of Health shall require that all investigators funded by the NIH submit to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication. Research findings conducted with support from public monies should be made available to the public as soon as possible, so that patients, doctors, as well as cancer research organizations and organizations that support cancer patients can use the most current knowledge in the most timely way. Sharing information through electronic formats on the internet is an effective and cost-efficient method to empower all to solve our national health challenges. Knowledge is power. Empowering our communities through the more current knowledge from public-funded research is certainly the responsibility of the NIH.

03/15/2008 at 05:06:00 PM Macdonald Bruce BSEE None Spring Lake MI US Other Member of the Public
Comment Topic: Public Access to NIH Funded Published Journal Articles
Comment: It's outrageous that information developed at public expense is handed over to private publishers for their profit.

Ten years ago I was diagnosed with a rare autoimmune condition. It took me six months to find the NLM PubMed database, and then I could only view abstracts.

It might help if the NIH/NLM would make it clear to the public that most hospitals have a medical library where full text articles can be obtained free or at nominal cost.

03/15/2008 at 05:03:31 PM kossove doreen md leiomyosarcoma is a rare cancer Berkeley california US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to NIH research
Comment: Please make public access to public funded NIC research available as soon as it is published.

03/15/2008 at 03:43:22 PM Nordbrock Terry Master of Library Science Candlelighters Childhood Cancer Foundation of Southern Arizona Tucson AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Please publish full-text articles online for no fee
Comment: We all should be able to view full text scientific journal articles online at no charge. All research funded by NIH that is published in scientific journals should be made available as full text articles online, with free access to the public.

Taxpayers already paid for the research, and should receive easy access to the findings.

03/15/2008 at 03:00:07 PM Roesler Rod MS Prostate Cancer Survivor (5 years) Madison SD US Other Member of the Public
Comment Topic: Availability of NIH-funded research results
Comment: It seems reasonable that the results of research supported by public funds be made available to the public at no additional charge as soon as those results are available.

03/15/2008 at 02:22:48 PM Feuerstein Jennifer BA US citizen and taxpayer Alamogordo NM US Other Member of the Public
Comment Topic: Public access to NIH funded research
Comment: As taxpayers, we should have free and unfettered access to the published results of government-funded research. The abstracts that are currently available through PubMed and other similar sites do not provide enough information, and access to the articles themselves is cost-prohibitive to the average citizen. I support making the full articles of all such published research available electronically for free.

03/15/2008 at 01:59:24 PM Paley-Bain Renee   NHL listserv Danbury CT US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Allow Access to medical articles
Comment: For those of us who are living with cancer, it is essential that we be able to see the results of research work on new drugs. In some cases it may mean the difference between life or death. Please ensure that any federally funded research be made available at no charge to cancer patients and their families. Thank you.

03/15/2008 at 01:42:11 PM Pam Baker BS/CPA ACOR Chicago IL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Availability of NIH accepted manuscripts
Comment: The research in lymphoma and specifically mantle cell lymphoma is expanding at an unbelievable pace. Acess to information for me may be the difference between life and death.

03/15/2008 at 12:58:14 PM Dawes Barbara retired RN patient Owasso OK US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access of NIH funded research studies
Comment: As a stage IV Leiomyosarcoma patient, the public access to current studies and research could mean the difference between life and death. Six months rather than twelve would be better for all.

03/15/2008 at 12:33:30 PM Mallick Indranil MD Tata Memorial Hospital Mumbai Maharashtra India Other
Comment Topic: Government funded project
Comment: I believe that government funded projects should be accessible to all those who pay for it (taxpayers) and be available immediately on publication. If that is an infringement of copyright laws, then such research findings should only be published in journals that are open access.

03/15/2008 at 12:15:47 PM Mann Trudie MS Caregiver Newport Beach CA US Other Member of the Public
Comment Topic: NIH funded research articles
Comment: Since my hushand and I are taxpayers that support NIH research, I find it appalling that the public can only get access to recent cancer treatments for a fee. All that information should be released ASAP and therefore sooner than 12 months after it is published for the good of the patient and not for profit.

I feel the relationship between the doctor and the patient is a trusted partnership. How can we as patients ask relevant questions about treatments when information is withheld from us unless we pay. I appeal to your humanitarian spirit that all helpful information by made available to everyone as soon as it is published. I want to know what treatments are viable and what ones are not before we commit to a treatment route.

Time is one of our enemies...we need information as it becomes available...sooner, not later!

03/15/2008 at 12:10:48 PM Kochenderfer Mykel Ph.D. Massachusetts Institute of Technology Chelmsford MA US Other Member of the Public
Comment Topic: NIH funded articles
Comment: As a researcher, I am strongly in favor of making NIH funded articles publicly available. This will advance research and understanding.

03/15/2008 at 11:59:37 AM Tkatcheva Olga MS Sarcoma Alliance, cureasps Richmond BC Canada Patient or Representative of a Public Health Advocacy Organization
Comment Topic: scientific journal articles online access
Comment: I feel pretty strongly that we all should be able to view full text scientific journal articles online at no charge to improve information use.

03/15/2008 at 11:59:03 AM Evens Leonard PhD Northwestern University Evanston Illinois US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to NIH supported research
Comment: I was treated for prostate cancer in 2000. At the time, I was very interested in looking at research on the subject. In fact, I found out from a literature search about the importance of PSA velocity and the threshold meriting a biopsy. This played an important role in the diagnosis of my PC since my primary care physician didn't normally look at PSAV. Since then I've followed the research on prostate cancer. As a retired university faculty member, I can with some difficulty get access to most such research but not all of it. Other prostate cancer survivors I've corresponded with have no such resources and are restricted to abstracts available through PUBMED/MEDLINE.

I strongly support making all publicly funded research freely available to the public. Publishers may have an economic interest in restricting such use, but that should not weigh more heavily than the public's need to know the results of publicly funded research.

03/15/2008 at 11:18:21 AM Baron Caryl H. BFA Lung cancer caregiver, taxpayer Sandia Park NM US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access
Comment: It is vitally important that the taxpaying public have access to published, publicly funded information that may affect their health, wellbeing, even survival. Access to relevant information can aid in making difficult treatment decisions or evaluating new options. The technology is there. Let’s put it to good use in at least one aspect of health care. A patient or caregiver can devote more time, attention and interest to researching a particular subject than an overworked doctor who may be inundated with multiple problems to research and no time to do it. Or an article in one field may spur innovation in another, innovation that might not occur without access to information. Let us not impede progress by restricting access to knowledge.

03/15/2008 at 11:08:45 AM Hotez Peter MD, PhD The George Washington Unviersity Washington DC US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: NIH Public Access Policy
Comment: U.S. citizens have long funded research to which they had little to no access. The new NIH Public Access policy will provide the public access to research results, and will allow healthcare providers and researchers worldwide with access to these results with an eye toward improving healthcare and advancing science for everyone's benefit. This policy truly increases the ROI on NIH research in the sense that taxpayers don't pay twice--once for the research itself and once to access it.

03/15/2008 at 11:03:30 AM vesel mary masters in communication disorders patient and taxpayer Indialantic FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Cancer Survivor
Comment: 1.I would like to have free access to research that would help in my continued struggle as a cancer survivor. Information that would help me to make more informed decisions in my treatment is critical.

2. As a speech pathologist research that would benefit my treatment of patient should be available.

3. As a tax payer I would want my money to support the free access of research that would help in the above situations.

03/15/2008 at 11:00:06 AM Kochenderfer Mary Anne PhD Medicine Chelmsford MA US Other Member of the Public
Comment Topic: Allow access to increase awareness
Comment: As a medical researcher and a cancer survivor, I believe that providing the public with free online access to full text scientific journal articles would greatly increase general awareness and understanding of current medical research. Such access would also improve the research capabilities of those on limited budgets who are sometimes unable to pay to view all of the articles they might wish to see.

03/15/2008 at 10:55:32 AM Everett Elyse MSW none Sound Beach NY US Other Member of the Public
Comment Topic: Open Access of NIH funded research
Comment: As a member of a NIH funded mental health research project from 1989 to 2003 I was frustrated by my lack of access to journal articles in the field that I was researching. Open access would be of great interest to me now as a mental health clinician in the community.

03/15/2008 at 10:48:15 AM Pedersen Nikki BA tax payer Topanga CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to NIH published data
Comment: As a tax payer and cancer survivor I believe NIH published data should be available for free: timely access to cutting-edge research can extend life or even save that life. I know first hand.

03/15/2008 at 10:42:44 AM miller roberta   cancer survivor franklin wi US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to journal articles
Comment: as a taxpayer, i should have free access to published research my tax dollars have funded (NIH funded research).

as a cancer patient, i should not have to pay for access to valuable, government-funded information that may help me proactively partner with my healthcare professionals in an effort to save my life.

03/15/2008 at 10:06:38 AM Hicks Michael Ph.D. Computer Science University of Maryland, College Park Burtonsville MD US Other Member of the Public
Comment Topic: open access means greater impact
Comment: As a researcher and professor in computer science, I am a strong believer in the academic scientific process. The cornerstone of this process is publication, vetted by peer review. Without reading about the work of others in a timely fashion, we don't know where we stand, what is left to do, what is not understood. Research proceeds at a breakneck pace today, carried out by thousands of people worldwide. Timely publication makes keeping up with this work possible, and helps us all work together.

Now imagine that all of this work is not just available to scientists in well-placed academic institutions that can afford to pay for it, but to anyone with an interest and an idea. We would multiply the potential for innovation tremendously. Anyone suitably motivated could learn something new and push the process. The few thousand scientists simply don't have time to do everything. But someone dying of cancer might find something that others missed, because of his situation. Such personal discovery is the kind of thing that made, and makes, America great. It's the American dream.

In short, I fully support open publication. Innovation is driven by information, and innovation is the heart of America.

03/15/2008 at 09:32:57 AM Jobe John PhD Physics Jobe Consulting LLC Missouri City TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to archived documents
Comment: We understand there is some resistance to free up access to archived articles and papers by those intent on protecting their rather lucrative revenue from expensive journal subscriptions. But for me, the issue is really simple: if we paid for it we should get to read it! And I also feel that 12 months is way too long to wait when such information could well be life-saving if made available ASAP.

John Jobe PhD Atomic & Molecular Physics

03/15/2008 at 09:23:26 AM baxter richard BS physics retired from boeing laguna Niguel calif. US Other Member of the Public
Comment Topic: publication of publicly supported research
Comment: All research funded partly or entirely by the government should be published and accessed by anyone for no cost.

03/15/2008 at 08:58:06 AM Ottenbrite Raphael PhD Virginia Commonwealth University Midlothian VA US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Accessablitiy to iinformation from NIH supported Research
Comment: I am in favor of the Public Access Policy that ensures that the public has access to the published results of NIH funded research. It requires that scentists to submit journal articles that arise from NIH funds to the digital archive PubMed Central

03/15/2008 at 07:44:58 AM Westphal Edward   none Kendall NY US Other Member of the Public
Comment Topic: Full text access to all journals
Comment: All NIH funded research papers ought to be made readily available at no cost to the general public via the internet. Current system restricts dissemination due to restrictive cost structure. Remove cost and make available to public whose taxes have paid for the research to be conducted and could benefit from the results of the work done.

03/15/2008 at 07:42:05 AM Lykins Charmian BSN George Mason University Burke VA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to Journal Articles
Comment: I am a parent of a two time leukemia survivor. I feel that access to peer reviewed medical literature (the full journal article as opposed to just the abstract) was invaluable in helping to decide on evidence based treatment that led to her current restored health. The type of leukemia my daughter had (ALL with MLL rearrangement) was rare enough for the treatment to be controversial. I needed to access current research to make an informed judgment on the options, risks, and experience of others. Fortunately for me, I am a member of a university and was able to access the articles through the university databases. Others may not have this option. Please let publicly funded research be available to the public. No one is more motivated to look for specific information than a patient or caregiver, and it is often this gathering of the available evidence that helps drive treatment decisions. Thank you.

03/15/2008 at 06:26:23 AM Baker Shirley MA, MA Washington University St. Louis MO US Representative NIH Funding Recipient Organization
Comment Topic: WU ready to meet NIH Public Access Policy Obligations
Comment: The transmission of knowledge is central to the mission of Washington University in St. Louis as is research and the creation of new knowledge. The underlying principle of the NIH Public Access Policy is to disseminate scientific knowledge generated by NIH funded research for the public good. We are confident that WU can meet its obligations to fulfill the requirements of the NIH Public Access Policy.

Shirley K. Baker Vice Chancellor for Scholarly Resources Washington University

03/15/2008 at 05:53:44 AM Anderson Rosemary   Neurofibromatosis, Inc. Grand Rapids MI US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access Policy
Comment: On behalf of neurofibromatosis patients in West Michigan, I strongly encourage the publication and online public access of research results for all NIH-funded studies. So many lives depend on NF research; the NF community needs visible proof of the scientific community's commitment to understanding this disease and finding treatments and a cure.

03/15/2008 at 05:20:30 AM Lawrence Jennifer   Moderator, Asherman's International Support Group Mechanicville NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: There is more and more literature being published each day regarding various medical conditions and it's becoming increasingly more difficult for health professionals to stay up to date on these studies. Because of this, I truly belief that that responsibility for learning about new and experimental procedures is falling on patients who might already be challenged by ever-increasing medical expenses and should not be further burdened by having to pay for medical research publications. By making these articles available to the public and allowing access for patients to do their own research, we will create a more educated, informed population who can serve as healthcare advocates for themselves and loved ones. It is critical that these articles be made available to the public so that we can all be aware of the most current information available.

03/15/2008 at 02:40:15 AM Munroz Elizabeth MA Sarcoma Alliance, Liddy Shriver Sarcoma Initiative, Chondrosarcoma Support Group Watsonville CA US Other Member of the Public
Comment Topic: Public Access to Medical Publications
Comment: As a Sarcoma Group Facilitator it is imperative to have up-to-date information available to my patients with this very rare cancer. I have no funding resources to support purchasing information which would literally make a difference between life and death.

03/15/2008 at 01:21:07 AM Ellis Anne Marie MA US Citizen, caregiver to person's with lymphoma, lung and esophageal cancers, and member of ACOR Contoocook NH US Other Member of the Public
Comment Topic: 12 months is too long
Comment: While I am glad that the concept within NOT-OD-08-057 is finally being moved on, i feel it falls way short of what is necessary. As rapidly as medicine advances all but the basic info in a publication may be obsolete within 12 months. If the public paid for the research i opine once published it should be public.

03/15/2008 at 12:40:26 AM Lehnert Richard BSEE, UC Berkeley Patient with NHL (ALCL) at Kaiser Roseville and Stanford Granite Bay CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open access to NIH sponsored scientific papers
Comment: As a newly diagnosed patient with NHL (rare subtype ALCL) knowledge is my best weapon to fight this disease. I am being seen by doctors at 2 fine medical institutions, Kaiser, Roseville and Stanford Univ, Palo Alto. However these doctors do not have the time to answer all of me detailed questions and teach me what it took them many years to learn. And the technology and new developments are happening so quickly it is difficult for even these professionals to keep up with all of the latest information. I have embarked on a journey to fight my disease with the most potent weapon available and that is knowledge. Knowledge for myself and also to share with my doctors. Currently it is frustrating to read tantalizing abstracts of reports about the results of clinical trials and laboratory research that appears to show real promise, yet not be able to read the details of the study in order to evaluate the results of the work. I have been only in this quest for a few months and there have been numerous articles I have wanted to read completely. Yet the access seems to be at a high cost and primarily through institutional gateways. At the very least it seems to me that all such research and reports funded by NIH should be available to patients by request as the Journal "Blood" allows. It is a matter of life or death to me. Rich Lehnert BSEE, UC Berkeley Retired 916-390-2240 richlehnert@msn.com

03/14/2008 at 11:00:10 PM Zuckerman Peggy MS in Ed kidney cancer association Palos Verdes Estates CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to medical research from NIH
Comment: As a patient with a rare disease, kidney cancer, I am painfully aware how difficult it is for patients and DOCTORs to get the latest information from research. Since most physicians are overwhelmed trying to follow a broad range of information within their own areas, they are assisted when patients can initiate informed discussions.

Patients who gain an education about their disease which is based on NIH studies will no doubt be more committed to their treatments. They also may be willing participate in clinical trials or genetic studies, all of which will have a general positive effect on the general public. Without such legitimate information, patients will be limited to less trustworthy sources.

Please do make such information readily and freely available to the public.

Peggy Zuckerman 2 El Portal Palos Verdes Estates, CA 90274

03/14/2008 at 10:25:51 PM Quiriy Christine BA ACOR Littleton MA US Other Member of the Public
Comment Topic: Public access to medical research
Comment: It is a hardship for non-professionals to get these articles. taxpayers pay for this research. We should have free access to the written results.

03/14/2008 at 10:24:36 PM Eva Nina   UStoo Chester VA US Other Member of the Public
Comment Topic: Access to Research Data
Comment: The transfer of information to patients and practitioners is being hindered because of expensive access to articles that are supported by tax funded research. Why should patients be taxed twice and their health made to suffer because it takes 10 to 15 years before new research proven procedures are widely put into practice. Free access can shorten this time by making the information available much sooner and possibly providing a longer life for many patients.

03/14/2008 at 10:13:12 PM Eva Norman   UStoo Chester VA US Other Member of the Public
Comment Topic: Access to Research Data
Comment: The transfer of information to patients and practitioners is hindered by the additional road block of expensive access to articles that are supported by tax funded research. Patients are being taxed twice and their health suffers because it takes 10 to 15 years before new procedures proven by research are widely put into practice. Free access is needed to research to shorten this time by removing one of the barriers to the process and giving patients faster access what could be life saving new procedures.

03/14/2008 at 09:56:05 PM Kasper Michael MBA ACKC Downingtown pa US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Mandatory publication of NIH-funded research
Comment: I am a survivor of Kidney Cancer who like ALL kidney cancer patients are seeking cures for our disease. Research and the information obtained from research is Vital for our ultimate survival. Please support the mandatory publication of articles resulting from NIH-funded research to be placed in a repository at the National Library of Medicine and made available free to the public. These articles should be available free of any fees to U.S. citizens.

Please support this access to vital information!

03/14/2008 at 09:36:38 PM Orr Scott JD PC survivor Columbia MO US Other Member of the Public
Comment Topic: NIH articles free access
Comment: I respectfully urge immediate access to all research articles of NIH without charge and hope this will be supported by all with ability to make it happen. Thank you for your listening to me. Scott Orr 573.489.6611

03/14/2008 at 09:16:10 PM Mawson Kenneth   ACOR ListServe, CTCL patient Lansdale PA US Other Member of the Public
Comment Topic: Public access to medical research
Comment: NIH medical research findings should be available for public review and reference purposes. These articles are most valuable when searching for any available information pertaining to a rare blood cancer, such as I have. This is one of the best resources for such information that I have found. To deny public access to the findings would be to deny someone access to a possible cure, or breakthrough treatment, for the type of condition they have.

03/14/2008 at 08:28:34 PM Goodrich Barbara MSN none missouri valley ia US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: open availibility of research findindings
Comment: As a renal cancer patient, I research all findings od my disease process. To make access to NIH research more open keeps patients and their families engaged in their life and ultimate outcome.

03/14/2008 at 08:13:51 PM Lee Martin BS BS AAS Cancer Paitent Kirkland wa US Other Member of the Public
Comment Topic: 12 month time frame
Comment: Personally 12 months is too long a wait. With the speed new research is coming up with new things to fight cancer, 4 or 5 months might be too long.

03/14/2008 at 08:06:16 PM Bell Virginia 2002 MA Government NMSU Listserv member Esarc Pearl River LA United States Other
Comment Topic: Free Public access to research articles
Comment: Research journal articles should be made available to the public at no cost - ever. My daughter died of Ewing's Sarcoma having survived for seven years after diagnosis. She twice received treatments her physicians had not seen because I had access to the information published by a list server for Ewing's Sarcoma patients, caregivers and loved ones. I am convinced that the treatments I read about online and brought to the doctors' attention extended her life and improved Katy's quality of life. In spite of medical insurance, my family was paupered by the illness and I could never have purchased access to the articles if they hadn't been made available free of charge by the list.

03/14/2008 at 08:00:15 PM Guy Connie   ACOR List Member Twinsburg Ohio US Other Member of the Public
Comment Topic: Free Access to Pulications
Comment: As a mother, advocate and soon to be RN, I feel it's imperative to have free access to medical journals.

03/14/2008 at 07:49:56 PM Kessler Linda Mom All West Sacramento CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: We need Access for free!
Comment: I am a single parent fighting for my son's life, already strapped financially and nickled and dimed as it is, with extra doctors appt's, parking fees,extra RX's, etc. This is a tremendous burden lifted from us if this is accessible without charge. Thanking you in adcance. Linda Kessler....oops second comment because the email was wrong.

03/14/2008 at 07:48:09 PM Kessler Linda Mom All West Sacramento CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: We need Access for free!
Comment: I am a single parent fighting for my son's life, already strapped financially and nickled and dimed as it is, with extra doctors appt's, parking fees,extra RX's, etc. This is a tremendous burden lifted from us if this is accessible without charge. Thanking you in adcance. Linda Kessler

03/14/2008 at 07:33:29 PM Wilkes Chrisann MS ACOR Norcross GA US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: I'm in full support of this public access policy. We should have access to articles that result from tax-funded research.

03/14/2008 at 07:29:38 PM Merritt Jean   US taxpayer Pekin IN US Other Member of the Public
Comment Topic: access to NIH funded research
Comment: As the parent of a child who has survived AML, I can attest to the need and importance of access to as much information as possible to make informed choices on treatment options. I spent many hours searching for information to increase our understanding of his disease so we could ask the right questions. This is very important since I have found that doctors don't like to convey bad news, but will respond with needed information if you ask good questions. As much as you may want to just let the doctor handle things in the middle of the crisis, I found this only leads to delays and missed treatment opportunities.

03/14/2008 at 06:51:46 PM Shmulovich Joseph PhD private New Providence NJ US Other Member of the Public
Comment Topic: access to publication
Comment: I strongly support the Policy implementing Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008)

Patients have to have a free access to vital and timely info, if their government paid for the research.

Joseph Shmulovich

03/14/2008 at 06:31:37 PM Clausen Charles   Moderator, prostate cancer discussion list, Association of Cancer Online Resources Grants Pass OR US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: Modern medicine has become exceedingly complex and expensive. Pressures of time during office visits make it difficult for clinicians to adequately inform patients about their medical conditions and their treatment options. Clinicians themselves have difficulty keeping up with the great volume of published research. Patients need access to medical journals in order to better inform themselves and be capable of participating meaningfully in discussing and deciding their treatment choices with their physicians. If citizens pay taxes for research, they should have free access to the published results.

03/14/2008 at 06:25:58 PM Mansfield Mark BA, MA, MBA (in progress) Indiana University student Bloomington IN US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Patients need access
Comment: For those with orphan diseases (such as atypical cancers) NIH information can often be invaluable in the discovery of treatments on the cutting edge. Access to this taxpayer funded research should be the right of public.

03/14/2008 at 06:18:16 PM obrien j Liberal Arts/Science none Portland Maine US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: PUBLIC ACCESS TO RESEARCH ARTICLES
Comment: Collectively, into the research melting pot, the public spectrum donates organs, tissues and other pathology for research, without really knowing where it is going and who is doing research, It doesn't seem right that anyone can prosper in research for whatever initiative from our bodyparts without releasing access to "our collective" information results.

03/14/2008 at 06:09:18 PM Carstens Mary   ACOR Madison Wisconsin US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to published results of NIH funded research
Comment: I support free public access to published results of NIH funded research. I am a kidney cancer survivor.

03/14/2008 at 05:51:13 PM Walters G. Thomas   Cancer patient San Diego CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Published Article Fees
Comment: Any article for any study which used any amount of public, taxpayer money, should be available for viewing by the public for free. Expensive subscriptions or per/article fees should not be necessary to view findings of publicly financed studies.

As a cancer survivor, I require access to this information. Not only have we paid taxes to support the research, but many of us have participated in the clinical trials on which these published articles report. We should not be expected to pay for access.

03/14/2008 at 05:42:35 PM Shapiro Richard JD Amyloidosis Foundation Sarasota FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: public access to full artilce
Comment: I favor the proposal to make the full article available after one year. This is the model used by the medical Journal BLOOD. Apparently they make sufficient profits to have lasted decades and is a very prestigious Journal.

03/14/2008 at 05:41:04 PM TYACK ELLEN BA;MSW PATIENT/CANCER SURVIVOR NEW HAMPTON NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: PUBLIC ACCESS TO RESEARCH ARTICLES
Comment: I am a two time cancer survivor: 2007 Uterine Carcinsarcoma Stage 3C and 2005 Papillary & Follicular Thyroid cancer Stage 1.

I found it absolutely necessary to educate myself about both of my cancers, but especially about my aggressive and rare uterine cancer. By reading articles that I found myself or articles that were made available to me through members of my online group for uterine carcinosarcoma, I have learned alot about my disease and treatment options. My uterine cancer is so rare that there are oncologists in this country who have never treated a patient with this diagnosis. I think that it is imperative that a patient have free access to research articles so that she or he can be confident that treatment being proposed or given is the best choice. We will never become as knowledgeable as our doctors but having free access to research articles would help us to become better informed members of our own treatment teams. Let's face reality; many of us will do our research online. It is extremely important that accurate and up to date information is available to us from reliable, accountable sources. And if our tax dollars are funding that research, then we deserve to have free access to the results. Synopsis reveal so little that they are often of no use, and few of us cancer patients can afford paying for numerous articles. Thank you.

03/14/2008 at 05:37:10 PM Paskay Licia MS Purpose Inc. Culver City CA US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: To whom it may concern, Please support the NIH Public Access Policy as there are so many peer-reviewed articles published every year and it is expensive for the general public or even non profit centers like mine to access the needed literature to stay current and educate and help the public. The proposal by NIH seems reasonable. Please support it. Sincerely, Licia C. Paskay, MS, CCC-SLP, COM

03/14/2008 at 05:28:01 PM Kuta Bob Citizen Child with Cancer Columbus NE US Other Member of the Public
Comment Topic: FREE Public Access
Comment: I believe that free public access should be given to scientific articles online to interested parties.

03/14/2008 at 05:09:46 PM Heim Erin MS Parent of child with cancer Yorba Linda CA US Other Member of the Public
Comment Topic: Free public access to scientific journal articles
Comment: I believe that free public access should be given to scientific articles online to interested parties.

03/14/2008 at 05:09:25 PM Stockel Eric   citizen Los Angeles CA United States Other Member of the Public
Comment Topic: access to research
Comment: I write to urge you to make available to the general public the results of research getting federal funding. There is simply no reason to hide from the public that which it has helped create. As someone who tries to assist those with lung cancer, I know that access to research articles can be difficult and expensive. Please make it easier.

03/14/2008 at 04:51:41 PM Olsson MiMi   http://health.groups.yahoo.com/group/MesenchymalChondrosarcoma/ Attleboro MA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Records
Comment: I spend approx 3 to 4 hrs a day researching articles for Sarcoma support groups. I scan PubMed, HemeOncLinx, etc. reading abstracts then contacting authors begging for free articles. The proactive parents and patients in my support groups have self-educated themselves with these articles and strive for the most up-to-date medical information and treatment options. These articles should be made available to everyone.

03/14/2008 at 04:49:11 PM Martinez Robin BA Association for Cancer Online Resources (ACOR) Denver CO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to research results
Comment: I am the widow of a kidney cancer patient. For over 10 years, I have worked online with caregivers and patients fighting renal cell carcinoma or transitional cell carcinoma of the renal pelvis and ureter. It is rare to find a person who even knows what those cancers are. The patients and caregivers are average citizens fighting to learn everything they can about advances that might give them a chance at life.

If the proper information is available to them, these people can move from medical naivete to a high level of understanding in just a few weeks. I have seen it happen countless times on our mailing list where we discuss these cancers and treatments for them. But we need more! We need free access to research results so patients can get accurate information and up-to-date treatment in a field that is changing daily.

Medical professionals also benefit from having research results freely available to the public. Highly-motivated patients and caregivers sieve out the most promising and important information and pass it along to professionals and others. Many oncologists have been able to use patient-provided research materials to everyone's benefit.

Since we the public fund NIH research, it is only right that we all have access to the written results. Please make this life-saving resource available to all of us.

03/14/2008 at 04:14:40 PM Graves Diane MLS Trinity University San Antonio Texas US Representative NIH Funding Recipient Organization
Comment Topic: Embargo period
Comment: This important legislation will provide access to information that previously has been unavailable to patients and physicians in rural areas (such as south Texas). It also will assist researchers at smaller institutions that do not support research libraries. I would like to see a shorter embargo period, as the content would be available in a more timely manner to all potential users, not just those who have access to medical research libraries.

03/14/2008 at 03:17:00 PM bacot angela n/a none Social Circle Ga US Other Member of the Public
Comment Topic: strongly urge free access to publications
Comment: My mother had amyloidosis for OVER a year without a correct diagnosis. Unfortunately she died prior to treatment due to the length of time it took to get the diagnosis.

I believe that if more information had been accessible without the associated high cost we may have been in a better situation regarding her treatment and the outcome.

Strongly believe that free access to publications should be made available and in a much shorter time frame than 12 months!!

03/14/2008 at 03:04:24 PM Brady Suzanne BBS Brady Marketing, Inc. Murrayville Georgia US Other Member of the Public
Comment Topic: Open Records
Comment: Please allow patients and their caregivers access to information regarding NIH projects which might prove helpful to us across the US. Since there are several ways of treating a patient for the same thing, it is so necessary to have available the information needed to give informed consent and to make a decision regarding possible alternatives for healthcare. As the wife of a stage 4 cancer patient with a rare disease, it is imperative that I understand as much as possible about the situation, know who the doctors are who specialize in our field of interest, and ultimately that we get the best, most up-to-date care available to us. Our stress levels rise and our income levels drop drastically as our loved ones face disease, even with good insurance! The fees charged now are exorbitant. And if these things are funded with government dollars, then shouldn't the public have access to what their tax dollars have provided? Thank you.

03/14/2008 at 02:54:44 PM Peipert Rosalie   Moderator Endometrial stromal sarcoma online support list on Yahoo Spotswood NJ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Availibility of NIH Research
Comment:  Please ensure that results of NIH-funded research are made available free of charge to the public as soon as possible after publication. 6 months would be more like it for people like me who have a rare type of cancer. Only .01% of us have uterine sarcoma. We need to know how to help ourselves it is critical to have information early rather than later. Cancer patients need to self-educate on their diseases and potential treatments, but the cost of doing so can be prohibitive. Patients and medical professionals should be entitled to the results of studies funded by our taxes. I believe knowledge is power. Help us educate our patients to know how to make educated decisions.

03/14/2008 at 02:52:25 PM Fauerbach Ellen MBA retired Denver New York US Other Member of the Public
Comment Topic: Publication of NIH funded research
Comment: I am in favor of public access through PubMed Central of all NIH funded research.

03/14/2008 at 02:37:46 PM Watson Mark MLIS University of Oregon Eugene Oregon US Representative NIH Funding Recipient Organization
Comment Topic: Support for NIH Policy
Comment: The University of Oregon (UO), along with the UO Libraries, is committed to implementing the NIH policy. The Library is actively recruiting for a head of scholarly communications in part to provide the institutional resources to help make the policy a success. Substantial efforts will be on the parts of Library subject specialists (i.e., liaisons to the various departments)to make sure that faculty are aware of their obligations and opportunities. The Library is also committed to partnering with the Office of Research Services & Administration to provide faculty education and assistance. The NIH Access Policy propels very positive changes in the scholarly communications arena.

03/14/2008 at 02:12:26 PM Phillipps Richard MPH, MSW Adcare Hospital of Worcester Newton Highlands MA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access to published results of NIH funded research
Comment: I would like express my strong support for public access to published results of NIH funded research. Per article charges are a very high $25 to $50 in addition to the tax dollars I've already contributed to the research. I can not, and I hope you do not, accept arguments that you or I must subsidize journals or that the public needs to be "protected" from information. Public Health and Medical Social Work are my specialties. My experience and the literature clearly show that an informed public is a healthier public. Healthier citizens are the most effective and humane form of healthcare cost containment. That's one area in which not go backward. Thank you.

03/14/2008 at 02:10:21 PM Suber Peter Ph.D., J.D. Earlham College, Yale Law School, SPARC, Public Knowledge Brooksville Maine US Other Member of the Public
Comment Topic: NIH public access policy
Comment: My comment is more than 3,000 characters in length and I've mailed it to PublicAccessComments@NIH.gov.

03/14/2008 at 02:01:53 PM Salzberg Steven Ph.D. University of Maryland College Park MD US NIH-funded Investigator
Comment Topic: Open access publishing
Comment: The proposed NIH policy requiring submission of all scientific papers supported by NIH funds is a truly wonderful step forward for science and for the public good. Open sharing of scientific knowledge is the foundation of all scientific progress. NIH and other government funding should be used to accelerate the progress of science as rapidly as possible, and this policy achieves that. It never made sense for scientists to sign over copyright to private publishers. We write the papers, we review the papers, we edit the papers, we even format them. The publisher's role has been reduced to a distribution channel, and the Internet now makes even that unnecessary. And the public pays for all of this. The public should have free, unfettered access to all the results of scientific research paid for by the public. Today, the Internet allows anyone to look up articles if they are publicly available - and the public is increasingly aware that many of these scientific articles affect them, especially research on human diseases. The open access policy will help make the public more aware of progress in treating a wide range of diseases, and it may save lives by steering people towards effective treatments and away from ineffective ones.

03/14/2008 at 01:40:27 PM Miller Jonathan MLS Rollins College Winter Park FL US Other Member of the Public
Comment Topic: Access for small colleges
Comment: I am the Library Director at a small private liberal arts college. We are not close to, or affiliated with, any large health science library. We have built a paper and online collection of journals that supports our undergraduate biology and health sciences program, but it is far from comprehensive. The NIH public access policy provides our students and faculty with much needed convenient access to a broad range of high quality health science research. This will not substitute for our local online and print journal collection but it does promise to expose our students to cutting edge research, thus improving their education, and ultimately the health care system in America.

03/14/2008 at 01:37:32 PM Watson Linda MLS Association of Academic Health Sciences Libraries Seattle Washington US Representative NIH Funding Recipient Organization
Comment Topic: Academic Health Sciences Libraries Support of Policy
Comment: I submit these comments on behalf of the Association of Academic Health Sciences Libraries (AAHSL), an organization of library directors of the 142 accredited and American and Canadian medical schools that belong to the Association of American Medical Colleges. AAHSL expresses its deep appreciation for the efforts that NIH is taking to ensure an effective implementation of the updated Public Access Policy (NOT-OD-08-033). We are optimistic that this policy will speed the pace of discovery by expanding access to research findings supported with federal tax dollars in order to better advance science and improve health.

Our member libraries are recognized as leaders on our campuses in addressing policy issues related to authors rights. We have encouraged our faculty to retain rights to use their work in teaching, for posting on their personal websites, or depositing to institutional or subject repositories. This new policy directs increased attention to the issue of authors rights, a matter of high importance to the advancement of scholarship.

Our libraries are partnering with research administrators and faculty on a number of activities to meet the April 7, 2008 implementation deadline. Many have taken steps to assist with the submission process. We are sharing “best practice” experiences with each other through our strong network, our website and a Toolkit. Our president is serving as a moderator for an online chat session on March 27 to discuss implementation strategies with libraries throughout the country. As preparation for the policy, AAHSL held a session at its annual meeting in November 2007 that included a presentation on authors rights. We are planning a session on the policy at the Medical Library Association annual meeting in May 2008 to continue the dialog with the larger medical library community.

Special mention is due to those publishers who facilitate the public access policy implementation by either participating fully in PubMed Central already, or submitting final manuscripts on behalf of the their authors. We look forward to an ever-expanding list of “fully compliant” journals that can ease the article submission process for our faculty. We recommend that NIH actively seek out partnerships with other publishers and work with other national associations to urge publishers to join the growing list of compliant journals. And we urge NIH to continue its work to streamline the deposit system and the timely updating of its website.

Thank you for your efforts to ensure a smooth implementation of the Public Access Policy. We believe the policy will result in a significant improvement in access to health information for our faculty, students and the academic medical centers that we serve. Our member libraries lend strong support to their institutions’ efforts to comply with the policy.

03/14/2008 at 01:33:04 PM Eaton Elizabeth PhD Houston Academy of Medicine-Texas Medical Center Library Houston TX US Other
Comment Topic: Support for the NIH Public Access Policy
Comment: The Houston Academy of Medicine – Texas Medical Center Library in Houston, Texas wishes to express our deep appreciation for the efforts that NIH is taking to ensure an effective implementation of the updated Public Access Policy (NOT-OD-08-033).

We have been supporting the Public Access Policy since its inception and are gratified to see the Policy take the form of a mandate. We are optimistic that this policy will speed the pace of discovery by expanding access to research findings supported with federal tax dollars in order to better advance science and improve health.

The Library is partnering with research administrators and faculty at the many educational and clinical institutions in the Texas Medical Center to implement the policy by April 7, 2008. We have been recognized as leaders in addressing the issues surrounding the Public Access Policy and institutional repositories in general. This leadership role includes educating faculty about retaining more of their authorship rights when signing publication agreements with their publishers and encouraging faculty to retain rights for using their work in their teaching, for posting on their personal websites, or depositing to institutional repositories. This new mandated public access policy affects so many of our researchers and focuses increased attention on the issue of author rights. We believe this is a very positive and important outcome.

We are developing methods to assist with the actual submission process. The NIH Submission System is easy to use once the author rights issues have been addressed, but when researchers need assistance, we are available to help. Many publishers have already worked to facilitate the implementation of the policy either by participating fully in PubMed Central or by submitting final manuscripts on behalf of the authors who wish to publish in their journals. These publishers are an important part of this process, and we look forward to an ever-expanding list of “fully compliant” journals that can ease the article submission process for our faculty. We recommend that NIH continue to actively seek out partnerships with publishers and work with other national associations to urge publishers to join the growing list of compliant journals.

Thank you for your efforts to ensure a smooth implementation of the Public Access Policy. This policy will result in significant improvement in access to health information, in research collaboration, and in supporting educational programs in the health sciences.

The Houston Academy of Medicine – Texas Medical Center Library is the library for Baylor College of Medicine and The University of Texas Health Science Center at Houston. You can learn more about us at http://resource.library.tmc.edu.

03/14/2008 at 01:25:55 PM Estoff Cindy BSN Leiomyosarcoma Patient Buffalo New York US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: I have leiomyosarcoma. It is a very rare, aggressive and deadly cancer. Only 4 people in a million are diagnosed and very little is known about this disease. Publications regarding this cancer are crucial to our survival. Time is very precious to all of us no matter what medical condition we are dealing with. We need information as soon as it becomes available. Knowledge is a powerful tool...it helps us in our health care decision making...it helps us to take charge of our disease....we are entitled to be a part of the medical team. Please don't delay.

03/14/2008 at 01:16:17 PM Schottlaender Brian MLS UC San Diego San Diego CA USA Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Mandate
Comment: On April 7, the NIH Revised Policy on Enhancing Public Access to Archived Publications resulting from NIH-funded research will be implemented. This is a welcome and important change in public access policy that the UCSD Libraries and other libraries in the University of California system support. The UCSD Libraries are actively working with the Office of Research on our campus to inform our many NIH-funded researchers and to provide assistance in making a smooth transition to the new policy.

As noted in a September letter to California’s senators from Wyatt Hume, UC Provost and Executive Vice President of Academic and Health Affairs, the new policy will maximize both the impact of research and the dissemination of new knowledge. The policy also appropriately recognizes and preserves the integrity of peer-reviewed journals, which play a vital role in the conduct of science, by providing a twelve-month embargo period that protects publishers’ subscription revenue.

Equally important, the NIH Revised Policy on Enhancing Public Access to Archived Publications promises to achieve the goals of expanding the use of NIH research findings in the advancement of science and public health; enhancing the management of NIH's invaluable research portfolio; and providing for a timely, sustainable, and openly accessible archive of research results arising from the substantial investments of U.S. taxpayers. These NIH goals are strongly endorsed by University of California scientists and librarians, along with their academic colleagues throughout the nation. Brian E.C. Schottlaender University Librarian University of California, San Diego

03/14/2008 at 12:51:51 PM Jerram Peter BA The Public Library of Science San Francisco CA US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: An Important and Long Overdue Open Access Policy
Comment: I head The Public Library of Science (PLoS), a leading Open Access (OA) publisher of scientific literature. Over the past several years PLoS and other OA publishers have conclusively demonstrated the high impact of open access scientific publishing. PLoS Biology for example is now the number one general interest biology journal in the world and it’s not yet five years old.

The NIH Public Access Policy will greatly expand the availability of the more than 80,000 articles that result each year from NIH funding. At the most fundamental level, of course, taxpayers have a right to see the results of research they have funded without paying an additional fee. But beyond basic rights, the policy’s impact will be far reaching and deeply felt. Two profound implications stand out.

1 Impact on Public Health. Currently, the general public does not have unrestricted access to rigorous, peer reviewed, high quality research. There are numberless examples of citizens seeking health information online, only to be denied the access for which they have essentially already paid.

Similarly, due to the high cost of medical journals, many physicians can’t afford to keep up with the latest research in their own fields. And health policymakers, who formulate influential public policy, are likewise barred from reading the full text of the latest research. In all of these cases, people are forced to rely on abstracts alone, which are sorely inadequate as the basis for critical clinical and health policy decisions.

In fact, there are several recent studies that suggest that abstracts often inaccurately represent the content of the research they purport to summarize. A recent editorial in no less an authority than The Lancet concluded that “abstracts are known to be fickle representations of an article.”

2 The Internet Unleashed. The internet has enormous power to not only disseminate information, but also to bring to bear computational tools to find, share and combine that information into virtual, interlinked libraries that will spark new ideas and spur scientific discovery.

The Wellcome Trust, Great Britain’s largest private funder of medical research, has noted that “as the tools for mining become more sophisticated, we will see new knowledge being created by the linking of research papers that previously had not been seen as relevant to each other. For this to happen, however, papers must be held in an open access repository and not remain hidden behind publishers’ authentication systems.”

The NIH’s seminal Open Access Policy will not only encourage others to follow suit with their own open access mandates, it will itself help unlock the power of scientific data and enable scientists to pioneer new kinds of computational research that can only occur in the open environment.

03/14/2008 at 12:51:09 PM Schmiedge Margot RN Kabuki Syndrome Network Regina Saskatchewan Canada Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to journals
Comment: I fully support access to information which has been made possible by NIH funding. As the director of a support group of a rare syndrome I know how difficult it is to access information without it costing an arm and a leg. That should not be. In today's world our medical system provides very fragmented care, each specialty only concerning themselves with their specialty. It has therefore fallen upon the shoulders of parents to coordinate and make sure that all aspects of their child's condition is being looked after. Today's parents NEED to be informed. Gone are the days where we can assume the medical field will inform us. I sincerely hope that information will become more readily accessible to them!

03/14/2008 at 12:48:17 PM dildine james MA, MA Information Science Greater Western Library Alliance Salt Lake UT US Other Member of the Public
Comment Topic: NIH Open Access Requirements
Comment: The new requirements to post NIH funded research results in a timely manner will greatly expedite the availability of that critical information. In many cases, the availability of this information literally represents a matter of life or death. The early adoption of this policy may be difficult for some organizations to fully comply and it may be necessary to allow some case by case exceptions. Nevertheless, the short time line is representative of the urgency felt by many health care professionals, their clients, and researchers; and are reasonable given the critical nature of the information.

I recently attend an all-day seminar of information specialists and the consensus of that group was that the new standards were much needed, and if anything could be more stringent. Its encouraging to see this policy being implemented.

03/14/2008 at 12:35:16 PM Goetsch Lori MLS Kansas State University Manhattan KS US Representative NIH Funding Recipient Organization
Comment Topic: open access and embargo period
Comment: As a Dean of Libraries at a research university, I support the NIH policy and am working with colleagues on campus to assure effective implementation. As a member of a family with many cancer survivors, I can also speak personally to the value of getting the latest research into the hands of the public as soon as possible. Knowledge is power when facing a life-threatening illness. Assuming that, at least for the moment, the embargo period will be for up to twelve months as the policy outlines, I encourage all NIH grantees to negotiate with publishers for shorter embargo periods. Exercise your rights as authors!

03/14/2008 at 12:34:57 PM Rusthoven James MD, MHSc (bioethics) McMaster University Ancaster Ontario Canada Other
Comment Topic: Access to published results of publically-funded research
Comment: As a clinical researcher and student of bioethics, I think the public should have direct access to the results of studies which they help to fund. Patients now often come with information about therapies on websites which do not contain peer-reviewed study results but rather represent poorly conducted studies or no studies at all. It is time that they have access to high-quality studies which they can review and compare with those they find on various other websites. At very least, this will show that the medical community acknowledges that the public wants to be informed and that medical community is helping to educate the public. It is then up to the patient and her physician to interpret the studies in the context of that patient's situation.

03/14/2008 at 12:34:20 PM Franklin Brinley MLS, MBA Vice Provost, University of Connecticut Libraries Storrs CT US Representative NIH Funding Recipient Organization
Comment Topic: Instituional Compliance
Comment: At the University of Connecticut, the President and Provost have sent a message to all faculty informing them of the NIH Public Access Policy and its effective date. The Libraries are sponsoring a forum on the topic on March 26th and faculty have been encouraged to attend.

The Libraries are working with the Office of Sponsored Programs to provide UConn faculty, and specifically NIH researchers, the information and resources they need to comply with the NIH Public Access Policy.

03/14/2008 at 12:24:12 PM Bliok Marilyn M.S. Guidance & Counseling Great Neck Public Schools as per diem teacher at this time Great Neck New York US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Why the public should know
Comment: Access to health information before it is filtered down to the general public, which may or may not happen, is important to those of us who have suffered and continue to experience terminal diseases. Amazingly, I am still alive after undergoing a Stage I LL lobectomy(no chemo) in 1994 and an UR lobectomy in stage IIIB or IIIA with chemo preceding in 2001. I need as much data as I can get to keep up with the most recent studies. I understand that what is considered best practice in one part of the USA and in other countries of the world is not standard. I am interested to know why and if any investigations have been made to determine what works best and for whom. I consider myself literate and can use a medical dictionary. Marilyn Bliok

03/14/2008 at 12:07:37 PM ODonnell Mary BS Amyloidosis Foundation Clarkston MI US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access
Comment: As a non-profit working to increase awareness of a rare disease, amyloidosis, it is imperative that any current up to date information be made available as soon as possible to allow us to help disseminate this information into the medical community. Especially information on diagnostics and treatments. Many publications allow free access after 6 months, and I would strongly urge the NIH to shorten the length to at least 6 months if not less.

03/14/2008 at 12:05:03 PM Hebert Ann Marie PhD patient Rancho Palos Verdes CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access Policy
Comment: Please make available to the public articles published with NIH funding. It is a hardship for members of the public, who do not have subscriptions to science journals, to be shut out of this research. It is our lives at stake, and many of us have educated ourselves on our own disease and are at least partially able to read and assimilate technical journal articles in the area of our own health issues. It is important that we have access to current information and research on our disease.

03/14/2008 at 12:01:25 PM Morrison William BA Johns Hopkins Univ. Grad Wilmington NC US Other Member of the Public
Comment Topic: Public Access
Comment: Free access and avalibility to NIH related publications is in the best interest of all members of the AMERICAN PUBLIC, THE AMERICAN TAX PAYERS, THE MEDICAL PROFESSION AND THE PATIENT POPULATION. NIH has a duty to foster complete access to all documents without encumbrances (including profits for contract companies to convey requested documents). Certainly the public deserves no less and without extended delay.

03/14/2008 at 11:46:26 AM Deutsch Harry   member of the public Glen allen va US Other Member of the Public
Comment Topic: transfer of information
Comment: The transfer of information to patients and practitioners is hinder by the additional road block of expensive access to articles that are supported by tax funded research. The patients are being taxed twice and their health suffers because it takes 10 to 15 years before new procedures proven by research are widely put into practice. Free access can shorten this time by removing one barrier to the process.

03/14/2008 at 11:30:29 AM Frydman Gilles   ACOR: Association of Cancer Online Resources New York NY us Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Comparison of NIH Guidance with CIHR (Canadian Institutes of Health Research) Policy
Comment: The federal Canadian policy statement, issued in September 2007, is very clear: "As a publicly funded organization, CIHR has a fundamental interest in ensuring that the findings that result from the research it funds, including research publications and publication-related data, are available to the widest possible audience, and at the earliest possible opportunity. Advancements in science and health care are made possible through widespread and barrier-free access to cutting-edge research and knowledge enabling scientists, clinicians, policymakers and the public to use and build on this knowledge."

Furthermore is states that for peer-reviewed publications of CIHR funded research output "grant recipients are now required to make every effort to ensure that their publications are freely accessible through the Publisher's website (Option #1) or an online repository as soon as possible and in any event within six months of publication (Option #2). Under the second option, grant recipients must archive the final peer-reviewed full-text manuscripts immediately upon publication in a digital archive, such as PubMed Central or the grantees institutional repository. Publications must be freely accessible within six months of publication, where allowable and in accordance with publisher policies."

The NIH should emulate such a clear policy.

03/14/2008 at 11:19:15 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Shorter embargo period.
Comment: While beyond the scope of implementation, it would be very helpful if the maximum embargo period was much shorter. As noted above, even at six months, the Library would not be able to cancel any of our journal subscriptions. A shorter embargo period would allow greater use by others of the NIH-funded research.

03/14/2008 at 11:18:38 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Require that published, not accepted, versions of the paper be available.
Comment: Some Cornell authors are concerned that their accepted manuscript, and not the published version of the paper, will be available through PMC. Their feeling is that the technical corrections, copy-editing, and formatting added by publishers would not itself be copyrightable and should not be afforded the kind of protections that original creative work is afforded. In all cases, the version of the paper as published should be accessible via PMC. You should require NIH researchers to secure permission to deposit the paper as published.

03/14/2008 at 11:18:05 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Increase the availability of information about publisher policies
Comment: It is critical for the success of this initiative that NIH continues to invest in the infrastructure that makes it easy to implement. There are at least three things that NIH should be doing: actively soliciting more journals to become full NIH partners; maintaining, in addition to the list of partner journals, a current list of journals that will submit author manuscripts on behalf of the authors; and coordinating with groups such as SHERPA/RoMEO and OAKLIST to ensure that they contain accurate information on the compliance/non-compliance of STM publishers with the PMC mandate.

03/14/2008 at 11:17:22 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Require partners to submit articles on acceptance, not publication
Comment: For authors who publish in journals that are partners with NIH, we are worried about when the accepted articles will be reported to the NIHMS system. In some cases, it may only be upon publication; in other cases, it may be at the end of an embargo period. This could be years after acceptance. In the interim, NIH researchers need a PMCID number to report on their grants and in their new applications. Publishers should be required to enter information into the NIHMS system upon acceptance. At a minimum, there should be instructions available on what authors in this situation should do.

03/14/2008 at 11:16:35 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Explain grant-linking requirements for publisher-submitted articles
Comment: Authors who submit their own manuscripts or have them submitted by the publisher must link the article to a grant in the NIHMS system, whereas authors whose publishers are partners with NIH do not have to do this. We are unsure why the first group of authors needs to undertake this step. Is NIH extracting the relevant grant information from the published articles as part of the ingest process? This should be explained.

03/14/2008 at 11:16:00 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Updated “Terms and Conditions” needed
Comment: Although the NIH FAQ talks about the responsibilities of principal investigators and authors, there is still much confusion about the role of the grantee institution in ensuring compliance with the new policy. Specific information on this on the web site and an updated “Terms and Conditions” for grants that includes information on the new requirement would be welcome.

03/14/2008 at 11:15:35 AM Stevens Michele Bachelor of Arts Thyroid Cancer Survivor Edmonds WA US Other Member of the Public
Comment Topic: NIH Public Access Policy - Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriates Act, '08)
Comment: Scientific papers published as a result of tax-payer funds (funded through the NIH), should be available to all interested parties. Given that the tax-payer has paid for this research, these papers should be available free-of-charge to anyone who wants to access them. I am a papillary thyroid cancer survivor and am an advocate for my own health, as I believe everyone should be. I've had to perform my own investigations to ensure I'm receiving the care that is necessary. Any information I can find is valuable and any research or articles/papers that have been paid for using tax-payer dollars should be avaiable to the public. The current PubMed system, although somewhat useful, would be much better utilized by people such as me if I could obtain the entire document versus just the abstract. I want to read all the nitty gritty, all the detail in these published papers. Viewing an abstract does not provide all the information that I want to see. I believe that everyone should have access to the published results of NIH funded research to ensure that the public can play their part in advancing science and improving human health. Although Sect. 218 states that all manuscripts should be made publicly available no later than 12 months after the official date of publications, I'd like to see the time-frame changed from 12 months to something more like 3 months. I don't understand why it should take 12 months to release these articles for public access.

Thank you for your time and consideration.

03/14/2008 at 11:15:16 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: Cornell’s Response to the NIH implementation
Comment: Cornell University Library has already made a substantial investment in fostering compliance. It has led an instructional initiative to inform NIH-funded researchers about the new requirement and to minimize any difficulties in implementation. Working in conjunction with staff from the Office of Sponsored Programs, the University Counsel’s Office, and the Office of the Vice-Provost for Research, the Library has prepared an informational web site about the initiative (http://www.library.cornell.edu/scholarlycomm/nihmandate.html). We also prepared a mailing to all NIH-funded PIs at Cornell alerting them to the new requirement. An article about the requirement will appear shortly in the campus newspaper, and we have scheduled instructional sessions with faculty and administrators. We have also established an electronic mail box where questions about the new policy can be posed by faculty. To date, no authors have complained about the policy – they only wish to comply.

The information that NIH has provided on the policy, including its FAQ and tutorials, is excellent; it has greatly aided our educational efforts. The responsiveness of the public access office to our questions about the policy implementation has also been fantastic. No initial implementation is perfect, however, and so we are separately submitting six suggestions for its improvement.

03/14/2008 at 11:13:51 AM Hirtle Peter MA, MLS Cornell University Llibrary Ithaca NY US Representative NIH Funding Recipient Organization
Comment Topic: General comments in support of the policy
Comment: The Cornell University Library applauds NIH on its implementation of the new law. We are convinced that NIH’s implementation will work to the benefit of Cornell University authors, the Cornell University Library, and scholars around the world.

For authors, deposit in PubMed Central (PMC) will maximize the visibility of their NIH-funded research. Preliminary research suggests that articles that are freely available are cited more often and have a greater impact rating than articles that are locked away behind subscription walls. This works to the benefit of our authors and the journals in which they publish. In addition, the availability of the article in a subject repository addresses one of the most widely-requested author demands in their publishing contracts. In 2005, the Cornell University Faculty Senate strongly urged “all faculty to deposit preprint or postprint copies of articles in an open access repository such as the Cornell University DSpace Repository or discipline-specific repositories such as arXiv.org.” PubMed Central is such a repository. NIH has crafted the implementation in such a way that it imposes relatively small burdens on the faculty, and we anticipate few problems in implementing it.

From the perspective of the Library, the implementation has also been very good. Deposit in PubMed Central ensures that the research results will be preserved in a state-of-the-art digital repository, thus addressing one of our major concerns: the long-term preservation of electronic journal literature. (See the Cornell report E-Journal Archiving Metes and Bounds: A Survey of the Landscape by Anne R. Kenney, Richard Entlich, Peter B. Hirtle, Nancy Y. McGovern, and Ellie L. Buckley, September, 2006, published by CLIR.) Unfortunately for our budget, we do not anticipate that the new policy will allow us to cancel any journal subscriptions. Our researchers demand ready access to the most current literature and can’t wait even six months for access to published literature. Furthermore, no journal consists solely of NIH-funded research.

For the rest of the world, free access after twelve months will ensure that researchers and students around the world will be able to read and build on the work, regardless of their (or their library's) ability to subscribe to the journal in which the research is published. Public access to publicly funded research contributes directly to the mission of higher education.

03/14/2008 at 11:10:08 AM Corman Stephen MS National Alliance of State Prostate Cancer Coalitions Stamford Connecticut US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access Policy
Comment: As the moderator of a hospital based support group, the Secretary of a national prostate cancer advocacy organization, and a three time cancer survivor, I urge that public access be made to the full text of any and all reports arising from any studies that obtain federal funding. Many patients rely on such reports, especially those on governmental web sites, to assist in making treatment decisions. Those of us who are in a position to counsel such patients need that information even sooner.

When we allocate public funds, it is not so that institutions and journals can make money. It is to fund helpful research. The results of such research should be freely made available to those whose tax dollars have helped fund that research.

03/14/2008 at 10:59:03 AM Danaher Kathryn BA Civil Society San Rafael CA US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: I support my free access to the published results of medical research for which my tax dollars paid. Thank you.

03/14/2008 at 10:58:55 AM Jones Edward C Phd Retired Accokeek MD US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to Journal articles
Comment:  Dear Sir: I am a prostate cancer patient and spend a great deal of time counseling other prostate cancer patients, and giving lectures on the need to be screened for prostate cancer on a yearly bases. To be able to answer questions about prostate cancer I need to read the current journals and keep my self up to date. It is advantages to me to read the original articles and not a digested form done by someone else. Here in lies the difficulty, most charges for published articles are in the order of $25 or more and frequently I cannot tell from reading the abstract if it is the article that I really want. When I spend a day at a medical library I usually come home with copies of about 10 articles, and as you can see the cost mounts up if I have to pay a fee for them. I very much feel that should be a free public resource. Sincerely yours, Ed Jones

03/14/2008 at 10:21:45 AM Buyukmihci Nedim V.M.D. University of California Dilley TX US Other Member of the Public
Comment Topic: Open access should be instituted
Comment: Scientific papers published as a result of tax-payer funds (that is, funded through the NIH), should be available to all interested parties. Given that the tax-payer has paid for this research, without any meaningful input on the appropriateness of it, the papers should be available without further cost. Currently, there is no way for the average citizen to do this. The current PubMed system is almost useless because only an abstract is provided. Abstracts are not sufficient to discern the true nature or results of the work done.

03/14/2008 at 10:15:33 AM Amrine Yvonne JD US Taxpayer San Diego CA United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Consolidated Appropriations Act, 2008 Section 218 of PL 110-16120
Comment: As a taxpayer and family member of a patient treated at NIH, it is important to me that these articles be accessible to the public on PubMed Central to help advance science and improve human health.

03/14/2008 at 10:02:44 AM Gingrich Franklin J. BA Citizen, Cancer Patient Woodbridge VA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to published research results.
Comment: Please ensure that results of NIH-funded research are made available free of charge to the public as soon as possible after publication but, in no case, later than 12 months from that date.

Cancer patients need to self-educate on their diseases and potential treatments, but the cost of doing so can be prohibitive. Patients and medical professionals should be entitled to the results of studies funded by our taxes. It is only right! Thank you.

03/14/2008 at 09:50:22 AM Eisnor Kristina BA/MS Dana Farber Cancer Institute/Children's Hospital Boston Berkley MA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to Research Articles
Comment: As the parent of a patient with a rare cancer, it has been very important to me to read the research available for my daughter's cancer. While many patients respond to traditional protocols and find their way through treatment, there are other patients that struggle. These patients that struggle are often asked to make unthinkable decisions about their care or their child's care. In this instance I believe it only right and humane to give that person access to the medical research that may help them make a more informed decision. Anything less is unacceptable.

03/14/2008 at 09:30:32 AM Marxen Harry BS/MBA UsToo Midlothian VA US Other Member of the Public
Comment Topic: Free Public Access to NIH Journal Articles
Comment: The transfer of information to patients is hindered by the additional road block of expensive access to articles that are supported by funded research. Free access can shorten the time by removing the barriers to the process. Patients are being taxed twice and their health suffers because it takes years before new procedures by resarch are widley put into practice/

03/14/2008 at 09:18:28 AM Hoffman Ruth MPH Candlelighters Childhood Cancer Foundation Kensington MD US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Public Access to Scientific Journals
Comment: As a mother of a two time cancer survivor (diagnosed at age 7 and 24), and Director of Candlelighters Childhood Cancer Foundation, I strongly advocate for free public access to full journal articles – i.e. the intellectual property that has been paid for through our tax dollars. It is imperative that patients and their families have access to research information so that they can make truly informed medical decisions. The current pay system to access full text articles creates an inequity in access to information. As Dr. von Eschenbach, former Director of the NCI said “Knowledge is Power.” The NIH has a responsibility to empower patients through access to the latest research findings.

03/14/2008 at 09:09:45 AM Oliver Kathleen MSLS, MPH Johns Hopkins University Libraries Council Baltimore MD US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: At Johns Hopkins University, the University Libraries Council strongly supports the NIH Public Access Policy.The new NIH reporting requirement will benefit Hopkins authors.The requirement provides an important opportunity to make published research funded by NIH and written by Hopkins authors accessible to all:the public, health care providers, educators and scientists, among others.This improved access will help advance science and, ultimately, improve human health.Deposit in PubMed Central ensures that research results will be preserved in a state-of- the-art digital repository.Free access within a 12 month period will maximize the visibility of Hopkins’research and ensure that researchers and students around the world will be able to read and build on Hopkins’ work,regardless of their ability to subscribe to the journal in which the research is published.Preliminary research suggests that articles freely available are cited more often and have a greater impact than articles locked away behind subscription walls. NIH public access will foster development of new research tools, open doors to new research avenues, and advance scientific discovery. At Johns Hopkins University, we have taken the following steps in response to the NIH Public Access Policy:1.Scheduled a meeting between the Dean of Libraries Winston Tabb, Nancy Roderer, Director of the Welch Medical Library and the Vice Provost for Research.The purpose of the meeting is to explore how the University and its Libraries can assist its authors in meeting the NIH mandate and support open access to the scholarly output of the University.We will present recommendations to the Provost on a University-wide publication agreement, the role of the University's repository, JScholarship,and the Harvard initiative.2.Created an FAQ on the NIH policy including an author's addendum and access to the SCAE to create their own addendum.The FAQ includes contact information for two members of the SCG, who will respond to questions from our authors. Liaisons will also assist their departments by directing them to information on the Policy.3.Advised our Vice Deans for Research in the Schools of Medicine, Public Health and Nursing of the FAQ; remain in close contact with the Office of the General Counsel sharing the Carroll White Paper and other relevant analysis of implications of the Policy for the University and its authors.4.The School of Medicine Vice Dean for Research sent two broadcast emails alerting faculty to their responsibilities under the new mandate directing authors to an FAQ on the NIH Policy.5.The School of Public Health and the School of Medicine will link to the resource from their research administration sites.6.The FAQ resides on a website for scholarly communication(openaccess.jhu.edu).7.Currently exploring with other institutions how we might develop an interface between our repository and PubMed Central in collaboration with other institutions and software developers.

03/14/2008 at 09:07:30 AM Garner Linda High Schoo, college ACOR Brooksville MS US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: My husband has a rare disease, an orphan disease, and access to publicly fund articles are very helpful to us as we try to make educated decisions concerning his heath care. Our local doctors have never see a case of this disease, amyloidosis. Thank you.

03/14/2008 at 08:35:30 AM Brown Thomas   US Citizen Kure Beach NC US Other Member of the Public
Comment Topic: Public access to study results
Comment: Please make available to the public, in electronic form, results of any study funded by the public. The sooner the better. Thank you for your consideration.

03/14/2008 at 08:27:30 AM matthews lonnie 1.5 years college Patient Tiffin Iowa US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: Please make it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and make them available free of charge to the public, no later than 12 months after they are published. Alowing us (patients) to be educated about our possible treatments is crucial to our staying alive.

03/14/2008 at 08:21:50 AM moon Peter PhD Us Too Prostate cancer Group Leader Richmond Va Richmond VA United States Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to NIH sponsor research papers
Comment: The transfer of information to patients and practioners is hinder by the additional road block of expensive access to articles that are supported by tax funded research. The patients are being taxed twice and their health suffers because it takes 10 to 15 years before new procedures proven by research are widely put into practice. Free access can shorten this time by removing one barrier to the process.

03/14/2008 at 08:09:16 AM Bogle Rick   Primate Freedom Project Madison WI US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: Published scientific papers are essentially the public's only window into the activities taking place in labs conducting taxpayer-funded behavioral and biomedical research. Accessing this body of research can cost tens-of-thousands of dollars annually. This creates a signifcant barrier to the public's knowledge and understanding of experimental methods and procedures being used. Since the research is taxpayer-funded, it can hardly be argued that the public should not have free access to it. We should not have to pay for it twice.

03/14/2008 at 08:03:02 AM Nesse Kristine BA, MA leiomyosarcoma patient Kettle Falls WA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Proposed release of research after 12 months
Comment: I appreciate NIH's position on release of medical research information for free after 12 months. As a patient with rare cancer who tries to stay updated on pertinent studies, a 6 month policy would be even more beneficial.

For those of us with aggressive disease, access to current research is critical as we attempt to plan toward and choose treatment options.

Thank you.

03/14/2008 at 07:51:29 AM Edwards Susan MAT Patient suffering from a Rare cancer Leimyosarcoma L-Sarcoma ilstserve Springfield MA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free access to NIH funded research is necessary
Comment: Access to NIH funded research ought to be free. As a patient suffering from a rare cancer Leiomyosarcoma (LMS) w/limited treatments I need access to the research to make informed decisions about my care. Many of us are on reduced incomes as our disease interferes with our ability to work as we did when we were healthy. In addition, publicly funded research morally ought to be in the public domain. Please consider changing your policy of charging to even look at the research. Those of us suffering with cancer should not have not to also worry about how we are to fund our personal research as we battle this deadly disease.

03/14/2008 at 07:47:27 AM DeLia Linda MA Association of periOperative Registered Nurses Denver CO US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Whether articles should be free to the public
Comment: Great idea! As a journal editor, I should be against this, but I believe that the results of research that has been funded by the American public. Twelve months after first publication seems perfectly fair to me.

03/14/2008 at 07:44:02 AM Sullivan Donna   US Taxpayer North Salem IN US Other Member of the Public
Comment Topic: Public access to research documents
Comment: As a member of a family with a hereditary genetic mutation for cancer I have spent years on the internet to find the latest and best information relevant to our cancers. This search often takes place when we are in the midst of making treatment decisions, or when dealing with an unusual side effect or problem. The frustration of being limited to an abstract after finally finding the information I'm seeking is terrible. It's also unfair since I don't have the means to pay an extra subscription fee. Isn't this research being done for us, the patients? Please. We need the benefit of this knowledge NOW.

03/14/2008 at 07:01:11 AM Weiss Beth Advocate Patient Advocate Swan Lake NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: The Policy implements Division G, Title II, Section 218 of PL 110-161
Comment: It would be wonderful if the articles could reach the public at 6 months or sooner rather than 12 months or later. Many make life extending decisions based on the research that is being done and for some, 6 months may be all they have left. Thank you.

03/14/2008 at 06:17:19 AM Jory Dan   ? Ilion NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to study results
Comment: I find it nessecary to have access to the results of the publicly funded trials. As a Cancer Patient I find it is nessecary to do our own research , and having public access to these publicly funded trials is a real help

03/14/2008 at 06:10:01 AM Wilkinson Keith MS US Citizen St. Louis MO US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: As a GBM (glio-blastoma multiforme) patient, an up-to 12 month delay in the ability to view research that may potentially extend my life is irrational. When first diagnosed, I was told the mean time of survival was 10 months. Time is not on my side. The quality of research results does not improve while sitting on a shelf in a dark room. The way to prove or improve them is through discussion and application.

03/14/2008 at 01:13:11 AM Smith Bob BS Public Larkspur Ca US Other Member of the Public
Comment Topic: public access to research results
Comment: As a cancer patient, I encourage free and open access to the results of cancer, and in my case particularly prostate cancer, research records. Research is funded by taxpayer money to develop innovative treatment methods to conquer cancer. As such, research conclusions should be available for free, public access.

03/14/2008 at 12:38:12 AM Wilson Mary Ann BA Neurofibromatosis, Inc.-Mid-Atlantic Lanham MD US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH-Funded Manuscripts Available Within 12 Months
Comment: March 13, 2008

Neurofibromatosis, Inc.-Mid-Atlantic supports NIH requiring all NIH-funded investigators to submit to the National Library of Medicine their final, peer-reviewed manuscripts upon accceptance for publication be made publicly available no later than 12 months after the official date of publication.

03/14/2008 at 12:16:20 AM Cain Lois MLIS University of Hawaii, Hamilton Library (ret) Honolulu HI US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: From a librarian viewpoint it is absolutely appalling that publicly funded research should not be published within 12 months free of charge for the benefit of the public that finances it. From a citizen viewpoint, my husband was diagnosed with leukemia in 2004 and it was imperative that we find the most up-to-date information on treatment immediately. Given that dread diseases are the major killers of American taxpayers, it is beyond appalling that current research results that we pay for should not be available as soon as it is published. Even a 12-month grace period is too long in my opinion. In health matters where current information is crucial, just weeks and hours can make the difference between life or death!

03/14/2008 at 12:15:53 AM Soto John   unaffiliated San Francisco CA US Other
Comment Topic: Need current information
Comment: As parents of a child with chronic myelogenous leukemia (CML) we need up-to-date technical information. This disease is so rare in children that only a handful of physicians are considered experts. Our first physician was a leukemia specialist, but our son was her only CML patient. We did considerable research to make sure that he son was provided with the best care. Ultimately it is up to the patient/caregiver to decide on a recommended course of treatment. We need the tools to do so, and access to current medical literature is crucial.

03/14/2008 at 12:07:57 AM Bradie Alice BA Lung Cancer Survivor Fort Collins CO US Other Member of the Public
Comment Topic: Public Access to NIH-funded Research
Comment: I was diagnosed in 2001 with Bronchioloalveolar Carcinoma. BAC is a relatively rare subtype of adenocarcinoma and is not well or widely understood; thus, treatment options are few and results are pretty much hit or miss. NIH, through our tax dollars, has funded significant research both directly and indirectly that may have bearing on my and other BACers' wellbeing. To deny almost immediate access to the fruits of those research dollars is unconscionable and immoral. Taxpayer funded research results should be considered part of the public domain as soon as possible; i.e., within 6 months of peer review, or earlier -- anything less constitutes a form of thievery.

03/14/2008 at 12:01:08 AM Demos Nick Masters of Social Work Citizen of the United States of America Snellville GA US Other
Comment Topic: Pass NIH Public Access Policy
Comment: As a Lung Cancer survivor, it has been increasingly important and vital for patients to advocate for their life and treatment, and having knowledge of research is just as important for the patient as at anytime to promote understanding of new research in finding cures as to understanding how effective treatment is that is investigated by public monies.

The Policy implements Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008) which states:

SEC. 218. The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine's PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.

The Public Access Policy ensures that the public has access to the published results of NIH funded research. It requires scientists to submit journal articles that arise from NIH funds to the digital archive PubMed Central ( http://www.pubmedcentral.nih.gov/). The Policy requires that these articles be accessible to the public on PubMed Central to help advance science and improve human health.

03/13/2008 at 11:51:07 PM Osterling Ann MA Ann Osterling Therapy Associates Champaign IL US Other
Comment Topic: continue to make studies available free through Pub Med
Comment: I have accessed many of the NIH-funded studies through Pub Med, wearing many different hats. As a speech-language pathologist in private practice, I have often needed research related to medical conditions of clients and evidence based information on assessment and intervention. I have also been a part of a University's research program that has been developing social skill groups for teens with autism spectrum disorders-it has been critical to have the latest research available to help in developing our program. On a personal level, I have referenced NIH funded studies to help my husband get through severe onset Rheumatoid Arthritis and then Hodgkins Lymphoma, my father find state of the art intervention at Loma Linda for his prostate cancer, my teenaged son's herniated disk and my own genetic predisposition to cholesterol problems. Having free internet access has empowered me as a patient, advocate, therapist and researcher. Thank you for ensuring this continues to be easily accessible and free of charge.

Ann Osterling

03/13/2008 at 11:21:05 PM Bolduc Nancy   spouse of patient Plymouth MN US Other Member of the Public
Comment Topic: Public Access
Comment: I think there should be access to the public of records and research- this is funded by the taxpayer to begin with!

03/13/2008 at 11:06:28 PM Nowlin Jon MSc US Geological Survey (retired) Carson City NV US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open access for current research of interest to prostate cancer patient
Comment: I was diagnosed with prostate cancer in May 2006. Thus far I am fortunate in apparently having an early, small, probably indolent form of cancer. After considerable research, I am following "Active Surveillance", deferring immediate treatment while monitoring the stage of the cancer by several means. And, concurrently trying to stay up-to-date on research on treatment alternatives and outcomes.

When first diagnosed, I was astounded to find that I had to pay to access current journal articles reporting the results of research funded with Federal funds-- i.e. my tax dollars. In a 35 + year career with the U.S. Geological Survey, one of the aspects of "Federal Science" that I appreciated was that all our information was made available at no cost to the public.

As a cancer patient actively monitoring my cancer and trying to stay current on potential treatment alternatives, I find it unreasonable and unconscionable that I have to pay to obtain research results funded with my taxes. For patients such as myself, even a 12 month delay in access to research may be too long. There needs to be a public respository for current Federally-funded medical research that can be accessed with reasonable charges-- just enough to offset costs of maintaining the appropriate databases and servers.

I will be following the results of the public access debate with great personal interest.

Sincerely,

Jon Nowlin

03/13/2008 at 10:59:31 PM Frydman Gilles   ACOR: Association of Cancer Online Resources New York NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Access to NIH funded published research
Comment: The NCI was a pioneer in letting the American public have direct access to the PDQ (Physician Data Query) statements. PDQ is NCI's comprehensive cancer database and open access to the statements written for health professionals has proven to be of enormous value to e-patients (for a definition of e-patient see http://en.wikipedia.org/wiki/E-Patient).

Research conducted over the last few years shows that Americans joining medical online communities do so first and foremost to obtain accurate, current and complete information regarding every aspect of their disease, including accuracy of diagnosis, available treatments, including all clinical trials, side effects of the treatments and any other short and long term impact the disease may have on their life.

The NIH proposed policy could only further enhance the availability of current, accurate and until now hard to find medical information. We should all support such policy since it can easily save lives. The ongoing democratization of medical knowledge (started with the PDQ Statements and followed by PubMed and the growing number of high quality open access scientific publications) may be the single most important tool at our disposal to retool the malfunctioning portions of the healthcare system. Informed patients can easily become empowered patients and empowered patients are quietly leading the transformation of the American healthcare system by demonstrating the real benefits of participatory medicine.

I just wish that the proposed guidance was even more oriented to the good of the American public and required open access after 6 months instead of a year. A number of peer-reviewed publications have already adopted the 6-months timeframe. It should become the new national standard for a nation facing dire consequences if we do not promote constant and ubiquitous innovation in the healthcare system.

Publication of any research paper funded by US Taxpayers should be openly and freely accessible to the public. It is an absolute no-brainer.

Gilles Frydman Founder ACOR.org

03/13/2008 at 10:06:02 PM Lake Howard BA recovering patient Sarasota FL US Other Member of the Public
Comment Topic: prostate cancer research
Comment: As an activist patient-advocate of prostate cancer there is the necessity of access to any and all material relating to prostate cancer research and treatment. I regard free and open access to the results of all publicly funded cancer research as a given. As such, research conclusions should be available for free, public access. Anything less should be regarded as an abuse of the public trust.

03/13/2008 at 09:58:27 PM Easom Colin Master of Arts None Tucson AZ United States Other Member of the Public
Comment Topic: NIH funded research
Comment: I strongly support the move to provide free access to journal articles funded by the NIH within 12 months of publication.

As the public are ultimately providing funding for this research it seems only fair that we should have access to it without having to subscribe to expensive research periodicals. Many of us face health issues in our lives that such articles have a bearing on, and often times doctors are so over worked that it takes patients own research to bring their doctors' attention to the latest findings.

Please help us to help our medical teams take care of us and provide us access to NIH funded research free of charge.

Thanks for your consideration.

03/13/2008 at 09:39:14 PM Maloof Edward High School Cancer Survivor Boscawen New Hampshire US Other
Comment Topic: NIH Accessability
Comment: When I was diagnosed with Cancer, I was totally scared and uninformed. I relied on the NIH Web Site for information that helped me not only understand my disease, but also the treatments being suggested. Knowing which treatments were more appropriate than others and the consequential side effects, both long term and short, made my progress easier to understand. That information also provided my care-giver what was needed to assure her that the assistance she was providing was the best that could be given under the painful circumstances of chemo-theraphy. As a tax payer, I feel I have already paid for that access and I expect it to continue. I would like to think the Regulators give greater consideration to the patients who have to deal on a personal level than any group who would deny us that access.

03/13/2008 at 09:27:16 PM Miller Robert   Patient Mesa AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access NIH funded research
Comment: Please allow the interested public free unrestricted access to research articles reated to NIH funded research. As a two time cancer survivor I know the importance of breaking research. Too many health professionals just do not have the time to keep up on the latest research and having this information empowers patients to help in their treatment.

Thank you for the opportunity to comment on this inportant issue.

Robert B. Miller

03/13/2008 at 09:22:57 PM Balcombe Jonathan PhD Physicians Committee for Responsible Medicine Washington DC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: open access to NIH funded publications
Comment: I welcome new legislation that would make it mandatory for articles resulting from NIH funded research to be made available (preferably online) free of charge to the public. Public access to taxpayer-funded published research should be a given. I have a professional interest in the NIH's work, and surely a considerable portion of the American population has a medical interest in same.

03/13/2008 at 09:22:49 PM Obermeier Jeffrey none none Ft Lauderdale FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Information release from studies
Comment: In regard to the proposed rule change that will require study information to be made available to the public free of charge after 12 months I, as a taxpayer, strongly support this measure. Publcly funded studies are for the benefit of the public and paid for by the public therefore the public is entitled to the knowledge gained by their funding. As a taxpayer I feel we have the right to gain benefit from our tax dollars without having to purchase the same from any non government entity. Privat publications do not fund these research items, the taxpayer does. Give us access to what we already paid for.

03/13/2008 at 09:13:02 PM Kienow Paul BS US-Too Phoenix AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Acces
Comment: As one who is dealing with aggressive Prostate Cancer, I need to be current with possible cures and treatments. Often documents concerning the latest publicly funded research are not readily available to me. This policy would resolve that problem.

03/13/2008 at 09:08:56 PM Maack Charles AA Us TOO Intl., Inc. Prostate Cancer Education and Support Network Wichita KS US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Access to NIH Research
Comment: As an activist patient advocate regarding prostate cancer recognizing the necessity of access to any and all material relating to prostate cancer research and treatment, I encourage free and open access to the results of cancer, and in my case particularly prostate cancer, research records. Research is funded by taxpayer money to develop innovative treatment methods to conquer cancer. As such, research conclusions should be available for free, public access.

03/13/2008 at 09:05:34 PM Skovronek Herbert Ph. D. retired Morris Plains NJ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open access to NIH results
Comment: Sir: The US Taxpayer paid for the research, the public has a right to have the results readily available at no additional charge, not through a for-profit journal or one supporting a professional association. And, by "results available" I mean the full report or paper, not just an abstract or raw data.

As a researcher, both for the government and for a contractor, I found that many funded studies never saw the light of day. That is wrong. Every government-funded study should be reported to the public, even if a total failure.

03/13/2008 at 08:44:46 PM Feist Patty M.S. ACOR Lyons CO US Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: My son was in treatment for acute lymphoblastic leukemia, and I currently administrate an ACOR listserve for other parents currently on or off treatment for this type of childhood leukemia. As an educator at the Univ. of Colorado, I am able to read full text articles online. However, most parents researching treatment plans for this rare cancer are limited to the abstracts on PubMed. For full text, they must either travel to a medical library to view the articles, or pay a fee to see the online version. Why should they have to pay, when their tax dollars have paid for the research in the first place?

I have experienced the difference between reading abstracts and reading the full text articles. Full text is so much better. We need public access to NIH-funded research articles to better participate in helping our doctors help our children beat this disease and to surmount the late effects caused by its treatment.

03/13/2008 at 08:40:06 PM Grant Anne N/A N/A Mills River NC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: We need free access
Comment: As a cancer survivor, who knows literally thousands of others either battling cancer currently or survivors like me, I know I can speak for all of us when I say that it's mandatory we have ready and free access to the intellectual material that we ourselves have funded through our taxes. We are our own best advocates for survival, given sufficient tools, and oftentimes financial hardship goes along with a cancer diagnosis. To not have access to the latest research findings is appalling.

03/13/2008 at 08:39:47 PM Garcia-Bunuel Luis MD Retired Prescott AZ US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Publications
Comment: It is obscene to charge for publicly-funded, tax-payer-supported research, for report of research results. The present practices amount of abuse of public trust.

03/13/2008 at 08:19:32 PM Showers Mac   Virginia Hospital Center Cancer Center Arlington Virginia US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Support public Access to Research Studies
Comment: As a prostate cancer survivor and PCa support Group facilitator for many years, I fully support the vital need for cancer patients to have free access to NIH-funded research studies. It is incumbent on all cancer survivors to educate themselves to the greatest extent possible on treatment choices, side effects, and new avenues of treatment resulting from current research. None of such information should be denied to patients, especially not at a price additional to taxpayer funds expended by the NIH. An educated survivor is the best patient. An educated patient is the most successful survivor.

03/13/2008 at 07:36:27 PM Thomas Gail   Mother Virginia Beach Va US Other
Comment Topic: Make Research Available to all
Comment: My 26 y/o son currently has his second oligodendroglioma for which there is currently no known cure.Finding research,any information that may enable him to live the life God intended him to have should be available for all.I ask this for him and the 180,00 people who are diagnosed with primary brain tumors each year. They need every bit of knowledge and hope that is out there.

03/13/2008 at 06:49:12 PM Richardson Jeanne MS Library Service; MA Biochemistry Arizona State Univeristy Tempe AZ US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: At Arizona State University (ASU), several Offices are collaborating to alert and assist NIH awardees at ASU in the timely deposit of NIH-funded peer-reviewed journal articles. In consultation with the Office of General Council (OGC), the ASU Libraries created a user guide (web page) that can be found at http://www.asu.edu/lib/scholcomm/nih.htm A printer friendly version of this help guide is located at: http://www.asu.edu/lib/scholcomm/Files/nih_print.pdf In consultation with the ASU Libraries, the Office for Research and Sponsored Projects Administration (ORSPA) sent out an e-mail to over 100 NIH Principal Investigators alerting them of the new mandatory NIH Public Access Policy.

The ASU Libraries created an e-mail address where users may submit any NIH-related questions. Experts in the Libraries will promptly answer all queries and/or seek referrals as necessary.

The ASU Libraries and ORSPA hosted group viewings and discussions of the webcast: Institutional Compliance with the NIH Public Access Policy. The ASU Libraries, Office of the Vice President for Research and Economic Affairs (OVPREA), ORSPA, and OGC are collectively branding the user guide, and remain committed to continue its collaboration and assistance to the ASU community.

03/13/2008 at 06:27:44 PM Shacklett Barbara PhD University of California at Davis Davis CA US NIH-funded Investigator
Comment Topic: NIH Public Access Policy
Comment: The proposed NIH policy:

Positively contributes to the advancement of science;

Serves the public health by enabling discovery, speeding treatment and cures;

Provides a direct return for public investment in the NIH;

Keeps the USA in step with other countries who have recently enacted similar polices;

Democratizes teaching and learning by providing new resources for scientists and teachers to use in new and innovative ways.

03/13/2008 at 05:34:54 PM Johnson JQ M.A. University of Oregon Eugene OR US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access policy
Comment: In my role as manager of a department that provides technology training and support for faculty, I have had several conversations with researchers who have been highly supportive of the public access policy. The general consensus is that (a) providing public access to government funded research is good public policy, that (b) the greater visibility that will come from being available in PMC will contribute to the impact of the individual articles, and that (c) the greater visibility will likely have a long-term positive impact on the prestige both of the individual researchers and, perhaps more interestingly, of the journals in which the articles are published.

As one researcher (who is also the editor of a journal in the life sciences) noted, this is free advertising for the journals. She also expressed some puzzlement about why, especially given the huge success of Google and similar new models of information access, some academic publishers seem so resistant to innovation.

There is, of course, some concern about implementation. Many authors are confused about what the terms of copyright transfer agreements allow, and about the potential for liability if they make an error. Some are concerned that the optional embargo period may imply very long delays from article acceptance to publication to eventual availability of public access. In medical research in particular, long delays may imply that members of the general public will still not have access to current research results that are crucial to informed medical decisions. On the other hand, I have heard very little concern about the actual mechanics of submitting final author manuscript to PMC.

03/13/2008 at 05:26:43 PM bayne susie NA ACOR Member martinsville IN United States Other Member of the Public
Comment Topic: NIH Public Access
Comment: It is so very important that this mandate be approved for anyone and everyone who is facing or has ever faced serious medical issues. These are vital documents that promote the latest scientific studies and findings and they should not be held captive for only people with the financial means to have access to them. I think the 12 month rule is more than fair.

03/13/2008 at 05:21:46 PM Neddo Barb MSE parent of a pediatric bone marrow transplant survivor Eagle River WI US Other Member of the Public
Comment Topic: Research Availability
Comment: As a parent of a child with chronic myeloid leukemia (and later a bone marrow transplant survivor) it was absolutely essential for me to access fairly current medical research that applied to my son's conditions. Access to research allows patients and caregivers to make informed decisions. It also allows patients to identify specialists to contact or research centers to contact for further medical exploration.

03/13/2008 at 04:49:22 PM Stowell Kyle   CFC International Farmington UT USA Other Member of the Public
Comment Topic: NIH Public Access Policy
Comment: I am speaking as a father of a child with a rare genetic mutation. The problem I have with the current system of public access to studies is the cost. It is prohibitive for me to gain access to articles that have been written about my son's condition. I think 12 months is a reasonable time frame for a publisher to earn money on articles they publish. After that time, for studies funded by NIH, the publicly funded studies should be available for free to the public!

03/13/2008 at 04:21:18 PM Worman Michelle LVN www.bmtsupport.org Hurst TX US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access
Comment: The information needs to be made available to the taxpayers, as we funded the research. The patient has to be their own best advocate, and in order to do this, we need access to any and all information related to our condition.

03/13/2008 at 03:24:09 PM Anderson Rudy MS Academy for Educational Development Alexandria Virginia US Other Member of the Public
Comment Topic: 12 Month Rule
Comment: I am writing to encourage that the 12-month publication rule remain in effect. It allows much easier access to publicly funded research. In a time when government contractors are already seen as less than scrupulous to alter this rule to give publishers or others more time to make money on the articles and research would be giving in to profiting pressure of contractors.

03/13/2008 at 03:09:05 PM Hill Emma Ph.D. Executive Editor, The Journal of Cell Biology, Rockefeller University Press New York NY US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Publishers Can and Should Conform with Implementation of the NIH Public Access Policy
Comment: I am the Executive Editor of The Journal of Cell Biology, published by The Rockefeller University Press (RUP). The RUP is a non-profit organization that publishes three highly respected scientific journals: The Journal of Cell Biology, The Journal of Experimental Medicine, and The Journal of General Physiology.

As a university publisher, the RUP represents the middle of the road in the ongoing dialogue about public access to published data – firmly in between the advocates for complete open access and those publishers who hold most or all of their content behind access controls.

The content of all three RUP journals is released on our own websites six months after the date of publication. More recently, we worked with the National Library of Medicine to post the full, final, copy edited, and formatted text of all of our content on PubMed Central to be made available to the public six months after publication. We thus already comply with the NIH Public Access Policy.

Two of the RUP’s three journals have been free to the public, six months after the publication date, since January, 2001. Even though our content is only under access control for a short time period, our subscription revenues have continued to rise over the last seven years. The RUP is thus in the unique situation of demonstrating that it is financially feasible for publishers to permit the release of all of their content in accordance with the NIH Public Access Policy.

At the RUP we strongly believe that scientific publishers have an obligation to release their content to the public, who provide much of the funding to generate that content and to buy subscriptions. In an ideal world, all publishers would fulfill and facilitate this obligation on their own. Although many publishers are doing so, there are still many who are not. We thus strongly support the NIH mandate for deposition of NIH-funded research in PubMed Central.

I do not know of a single publisher that has publicly declared, in a forum available to their readers, opposition to the NIH mandate. This is probably because they fear alienating the readers on whom they depend for content and subscriptions. In contrast, many publishers have publicly declared support for the NIH mandate.

Publishers who oppose this policy may present various arguments, but the bottom line is that they fear losing subscription revenue. In a sense they have a financial conflict of interest with respect to this debate that should be declared up front, just as we require authors and reviewers to do with regard to submitted manuscripts.

With tax-payers money, the NIH funds the research. NIH funded researchers perform and review the research. And thus, the data from any resulting publications can and should be made available to the public. To this there should be no argument.

We urge you to implement the mandate as soon as possible.

03/13/2008 at 03:05:18 PM Scrivner Libby   Leukemia Mobile AL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Access
Comment: I have leukemia and the articles are an invaluable resource for those of us trying to pursue the best choice of treatment and to better understand our disease. Please allow them to be free to the public.

03/13/2008 at 02:44:24 PM Rixey Scott Cynthia JD, MLL Brain Tumor Action Network Denver CO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NLM Public Access Policy
Comment: I am a survivor of a right cavernous sinus meningioma for which I had gamma knife radiosurgery in December 1999. I am active on internet brain tumor support lists. My educational background includes a master in librarianship and I am a former reference librarian. I freqently post information about research articles related to brain tumors, and particularly meningiomas, which come to my attention through internet searches, as well as brain tumor research oriented websites. Also articles are brought to my attention by other internet brain tumor support group members.

Generally, it is abstracts that are available. It is not unusual to there to be a request for a fee to view the full text of an article. On occasion I have recommended that members of the brain tumor community seek access to the article for which there is a fee through the interlibrary loan department of their local library. How much easier it would be to have access through the National Library of Medicine website.

For brain tumor survivors, as well as for many disease specific patient groups, the information that comes from rigorous research can literally mean the difference between life and death. It is not unusual for patients to discuss the most recent reaserch results with their treating physicians to determine if they may be a candidate for a particular treatment.

Our ability to access medical research articles online is one way in which we can have some semblance of control. "Knowledge is power" is more than a cliche to those whose lives are challenged by life threatening orphan diseases. Many of us want to be informed consumers and an active part of our treatment team. Additionatlly, directly or indirectly it is our dollars that support medical research.

As patients it is unacceptable that we be denied access to potentially life saving research results for want of a fee.

I fully support the NIH public access policy and would hope that articles are available online well in advance of the 12 month period after publication deadline.

Thank you for your consideration.

03/13/2008 at 02:13:44 PM Van Gemert Edward MA University of Wisconsin-Madison Madison Wisconsin US Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Access Policy
Comment: The Libraries at the University of Wisconsin-Madison have taken a leading role, along with Legal Services, Research and Sponsored Programs, and the Research Deans, addressing the NIH Public Access Policy. Wisconsin receives approximately $500M in federally funded awards each year with about $250M coming from the NIH. It is therefore critical that we understand our obligations and provide reasonable methods for compliance for our authors, investigators, and PIs. The Library's NIH working group of the Scholarly Communication and Publishing Committee is busy with presentations across campus; alerting NIH investigators to the policy changes and offering assistance with copyright management, manuscript submission to PMC, and subsequent citation (PMCID) work. That demonstration of leadership has been greatly appreciated across campus. We know that we will encounter difficulties; with journals and publishers who will not initially agree to amended transfer agreements, but we believe that with time--that will change. We are confident that we can manage our obligations.

03/13/2008 at 02:11:16 PM Miniken Donald A.S. LUNG-NSCLC@LISTSERV.ACOR.ORG Hoquiam WA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: access to medical research
Comment: free access to the published results of medical research

03/13/2008 at 02:11:04 PM Margolis Natalie MS ACOR Woodstock NY US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access
Comment: As a breast cancer and NHL patient, I need to know what options are available to me for treatment.

03/13/2008 at 02:06:56 PM Greenberg Marvin EECS none Arlington VA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public access to Publically funded medical research
Comment: I have extensively used available medical research as a patient and care giver to understand the pros and cons of different treatment approaches in the treatment of cancer, understanding the basis for different clinical trials, and generally getting more information from another one more during the difficult period when under a diagnosis of cancer.

Having more reliable, reviewed research available, that was funded with public funds, is to the benefit of patients, researchers and the NIH.

03/13/2008 at 02:05:36 PM tashman eva bs none los angeles ca US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: public needs access to NIH funded reports
Comment: The public needs easy access to published reports of studies sponsored by the NIH. My husband who has a rare cancer could not have survived the past few years without educating ourselves and take front row seats in our cancer treatment. With more and easier information we can be effective advocates and actually help the doctors with our treatment. These are nationally funded research that needs to be available to everyone.

03/13/2008 at 01:50:08 PM Evans Michael BA None Apopka FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Policy
Comment: The Public Access Policy should ensure that the public has access to the published results of NIH funded research. People like myself with possibly terminal cancer could then take some control of educating ourselves as to what the latest research says about possible new strategies for combating our diseases. I believe this is a life and death issue and we the tax payer have funded these research projects. Let us have access to what we have paid for.

03/13/2008 at 01:33:19 PM Thurman Judy   Advocate: Men & Families dealing with Prostate Cancer Spring Hill TN US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: NIH Public Access Polciy
Comment: I am in full support of the change in the NIH Public Access Policy. Citizens of the United States who pay taxes should not have to pay twice for access to potential life saving research. Free access is necessary to avoid the hardship patients experience when dealing with high charges for full text studies. I support the change.

03/13/2008 at 01:31:35 PM Larson Richard MD, PhD University of New Mexico Health Sciences Center Albuquerque New Mexico US Representative NIH Funding Recipient Organization
Comment Topic: Public access to published results of NIH funded research
Comment: This policy clearly puts universities in a precarious position between publishers and NIH. Since it is unclear that publishers will change their policies, it may either decrease publication rates or put universities in a position of not being able to meet the requirements of this policy. I would hope that stop-gap measures could be put in place that do not penalize a university who is trying to comply but cannot due to intransient publisher policies.

03/13/2008 at 01:30:08 PM Hammett Carole BA Lung Cancer Alliance Boulder CO US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Free Publication of Medical Research
Comment: I support making it mandatory for articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the public.

03/13/2008 at 01:22:45 PM itri cathy BA cancer patient danbury ct US Other Member of the Public
Comment Topic: Need access...
Comment: As a person who has to deal with three cancers, I need access to as much information as the NIH has through its various branches. Recently I tried to gain access to a possible trail using an experimental cancer drug and wanted further information but could not get it without cost. I have enough to deal with just paying for my medical so any savings is a plus. It's not right to ask the public to pay for what is already theirs . After all we pay for this accumulation of knowledge through our tax dollars. Please open up this vast storage of medical information at no cost. It will be a God sent to some many, many patients and their families. Thank you.

03/13/2008 at 01:22:16 PM Monaco Jo MSLS none Dover PA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: free access to NIH research
Comment: Please do whatever possible to make access to cancer research available to those of us who are battling cancer. Informed patients are more likely to receive appropriate treatment. Also knowing as much as possible about our condition is a help in mentally coping with this disease.

03/13/2008 at 01:11:29 PM Nowak Joel MA, MSW Malecare, Inc. Brooklyn New York US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access
Comment: I am fully supportive of free open public access to all research that is derived from public funds. If research was paid for by public dollars then the results belong to the public. The public should not have to pay twice.

Free and open access will enhance the advancement of basic science and health care.

03/13/2008 at 01:11:09 PM Grundler Clark BA Patient Fort Worth Texas US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Make public NIH funded research reports and articles
Comment: I am dealing with my second cancer. At this time I believe it is important for me to be an informed patient, fully capable of participating in my treatment decisions. As such it is vital that I am current on published works concerning my disease. I also am on social security disability retirement as a result of the long term affects of radiation treatment for my first cancers. My income is $1,035 per month. I cannot afford to pay to read articles from medical jounrnals. NIH funding for research is public monies therefore the report results should be available to the public at no charge. Please pass this requirement.

Clark Grundler

03/13/2008 at 01:08:46 PM Roberts Diane   Citizen and taxpayer Bristol CT US Other
Comment Topic: Public access
Comment: I am in full support for NIH published results of medical research be available to citizens as soon as articles are published.

03/13/2008 at 01:07:24 PM Hanson Jaydee M.A. International Center for Technology Assessment Washington DC US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Public Access of NIH funded Research
Comment: As the Director for Human Genetics Policy at the International Center for Technology Assessment, I find it important to stay abreast of the latest research findings on human genetics. Much research in this area is funded through NIH grants. As a relatively small non-profit, the cost of scientific journals is huge. It is more frustrating when we are paying to get research that the US Government has paid for. In some cases, we have filed freedom of information requests to get access to the research. If the NIH made available research findings in a prompt manner, it would save us money and would likely save the NIH much staff time by not having to respond to as many freedom of information requests. The one-year delay in posting the research is unnecessary. These are rapidly moving fields; waiting a year is too long; please require posting on the NIH site as soon as the article is accepted for publication.

03/13/2008 at 12:49:17 PM Beasley Dale BS CRCFA Ilwaco WA US Other Member of the Public
Comment Topic: Free Public Access
Comment: It seems only fair that publications funded with taxpayer dollars are accessable to the public at NO fee, especially if they are transmitted electronically.

Dale Beasley, Member of ACOR list serve

03/13/2008 at 12:48:06 PM Johnston Lorraine BS Life Sciences US taxpayer Monkton MD US Other Member of the Public
Comment Topic: In support of this effort
Comment: I and my fellow US taxpayers are entitled to free access to the medical studies published as a result of NIH-funded research.

03/13/2008 at 12:17:37 PM Hadwiger Jeff PhD Oklahoma State University Stillwater Oklahoma US NIH-funded Investigator
Comment Topic: Public Access Policy
Comment: I'm in full support of this public access policy. As a researcher from a non-medical school university, I feel that this policy helps to level the playing field of research competition by making recent scientific information available to everyone. While realizing publishers need to turn a profit, I suggest the 12 month period be shortened to 3 months. Some publishers seem to do fine even with immediate release of the information. This can only speed up the progress of scientific research.

03/13/2008 at 11:45:24 AM Chaitowitz Simon n/a n/a Washington DC US Other Member of the Public
Comment Topic: public access to medical studies
Comment: I support the free and open access of all medical studies to the public.

03/13/2008 at 10:08:43 AM Mabe Michael MA(Oxon) International Association of STM Publishers Oxford Oxfordshire UK Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: NIH Mandate
Comment: STM continues to be concerned by the recent passage of legislation in the United States concerning the NIH mandate on deposit of peer reviewed manuscripts.

The mandate neither provides compensation for the added-value of services that these manuscripts have received from publishers nor does it earmark funds to ensure the economic sustainability of the broad and systematic archiving this sort of project requires. It also undermines a key intellectual property right known as copyright – long a cornerstone used to foster creativity and innovation.

STM believes that this legislation establishes an unfunded government mandate with an unknown impact on the advancement of science and puts at risk a system which has enabled more research to be available to more scientists in more countries than at any point in the history of science.

Other governmental bodies, such as the European Commission, have recognized the unique role and extensive investments made by scientific publishers in the organization of peer review, the management of publication processes, the production, access, distribution, preservation and digitization of scientific knowledge. They have called for an evidence-based approach toward questions like the broad and systematic archiving of scientific manuscripts to ensure that the current system of scientific publishing is not destabilized without reason. Regrettably, neither the acknowledgement of the key role that publishers play in the advancement of science, nor the commitment toward an evidence-based approach, nor the funding to support this broad mandate seems present in the current U.S. legislation.

STM publishers will, of course, comply with the laws of the nations in which they operate. At the same time, in order to fulfill their primary mission of maximizing the dissemination of knowledge through economically self-sustaining business models, they will continue a vigorous engagement with appropriate stakeholders on issues such as this where legislative change seems necessary or desirable.

03/13/2008 at 10:07:04 AM Genetti Marianne BS In Need Of Diagnosis, Inc. (INOD) Orlando FL US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: In support of open access - proposed NIH policy
Comment: In Need Of Diagnosis, Inc. (INOD) is a non-profit which, in part, supports those who are ill with a medical problem that has eluded diagnosis. It is not unlikely that the problem has eluded diagnosis because the disorder is rare or, perhaps, becuase it is a disorder that has not yet been identified and named. In these cases especially, it is important that new research be made available to the public as soon as possible. We request NIH's support of open access to the results of NIH funded research. Thank you, Marianne Genetti, Exec.Dir., INOD

03/13/2008 at 09:37:53 AM Ioannidis John MD, PhD University of Ioannina School of Medicine and Tufts University School of Medicine Ioannina Epirus Greece Representative NIH Funding Recipient Organization
Comment Topic: In support of open access - proposed NIH policy
Comment: Any improvement in open access is likely to have a major impact in improving the yield and efficiency of scientific research in the US and at a global level. I would like to strongly support the NIH initiative for open access. Researchers, patients, and the general public would reap more of the benefits of the NIH investment in biomedical research.

03/13/2008 at 08:59:18 AM Patterson Mark PhD Public Library of Science Cambridge CAMBS UK Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Support for NIH Public Access Policy
Comment: I would like to express strong support for the Public Access Policy of the NIH. The policy will ensure public access to around 80,000 original research article each year funded by the US taxpayer and will inspire similar policies at funding agencies around the world.

Public access to research publications will accelerate research by allowing any scientist to read, use and build on the work of others. Deposition of the articles in PubMed Central will also allow better integration of research literature with the data that underpins research, bringing further benefits to the research process. Beyond the research community, the NIH policy will also enable any interested reader - physicians, educators, students, journalists, patients and so on - to access research literature, bringing further benefits for education and health. With the provision of an embargo of up to 12 months, the policy also balances the needs of publishers who rely on subscriptions to cover their costs.

03/13/2008 at 08:39:22 AM Rintamaki Michelle BA Kids With Heart Natl Assn for Children's Heart Disorders, Inc Green Bay WI US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: articles resulting from NIH funded research to be placed in a repository at the National Library of Medicine and made available free of charge to the
Comment:  I feel that this is a very positive move that would provide access to this information to many patients/ parents/ etc who would otherwise not have access to these results/ information. With our health care situation as it is, education is power but it is also necessary for us to advocate for our families. Access to this kind of information enables us to do this much more effectively. Please do not hesitate to contact me at 1-800-538-5390 or michelle@kidswithheart.org

03/13/2008 at 08:20:21 AM Fontaine-Terry Patrick JAD Lay Public Chevy Chase MD US Other Member of the Public
Comment Topic: Open Access to Articles
Comment: Partially federal funded research that was released in a peer reviewed scientific journal should be available for open access no more that 12 months after original release. Open online access to scholarly scientific articles should be demanded and a new mechanism to require compliance should be adopted by the federal government. It is obvious to me as a lay person that the past agreements and compromises that NIH and the government have agreed to are insufficient and not be complied with by most of the journal publishers. As a taxpayer I fully expect that authors, publishers, and publishing conglomerates to abide by the open access agreements committed to over recent years. But unfortunately there remains a paucity of adherence and a shameful lack of sincere interest to permit access to dated articles. In some cases journals remain closed and require an access toll fee to retrieve full-text versions of correspondence, opinion pieces, and other federally funded primarily research for years and years beyond the original release date. It should not cost me or anyone $25, $45, $55 dollars to access a three year old article. Examples of proposed solutions that NIH could easily incorporate into the funding and grant making process: 1) Include in the application, scoring, and study section review process that the investigators have the option of pledging to open access publication. Commitment to open access publication by the authors could be a weighted scoring criteria for competitive review and funding. 2) NIH should survey and publish a Review of Compliance to open access and self-archiving of all the major scholarly scientific journals. 3) NIH should release a Score Card of scientific journals on the issue and adherence to open access after a specified closed subscription embargo. 4) NIH should craft a statement of Preferred Publication Strategy for any and all publicly funded researchers and institutions. 5) The NIH, as a matter of policy and the Director should make patently clear statements about the value and benefit of open access to all scholarly scientific articles.

03/13/2008 at 07:34:33 AM Barlow Michelle BA Hidradenitis Suppurativa Foundation San Diego CA US Patient or Representative of a Public Health Advocacy Organization
Comment Topic: Open Access
Comment: I believe open access is essential and only wish that it was less than 12 months.

03/13/2008 at 07:13:22 AM Schmidt Harald MD/PhD Monash University, Melbourne, Australia Glen Waverley VIC Australia Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Free publication access shifts the focus of research to what really matters - the advancement of science
Comment: The proposed NIH policy will help to advance free access and discussion of science. This will serve the public by redirecting the scientist's interest away from publicatiion as an output but rather focus on the real advancements and outcomes, such as relevance of work, translation into diagnostics and cures. A huge cost burden of subscribing to costly journals to read your own work and that of your colleagues would be removed. Innovative communication tools could be added, i.e. commenting, discussion and rating of papers post publication. Thus the individual paper and its finding rather than the journal where it is published would become the focus of attention. This will provide a much better and direct return for public investment in the NIH. Keeps the USA in step with other countries who have recently enacted similar polices. It also democratizes teaching and learning—by providing new resources for scientists to use in new and innovative ways.

03/12/2008 at 08:49:17 PM butcher karyle mls libraries corvallis or US Representative NIH Funding Recipient Organization
Comment Topic: public access
Comment: I support the NIH policy on open access to ensure that publicly funded research is made available to the research community and general public within 12 months from publication. The library community and others have in place or are putting in place processes which enable the researcher to deposit her/his information in a timely and efficient manner. Making this research available will have a great benefit on other aiding other researchers as well as providing the public with tools to make more informed health related decisions.

03/12/2008 at 08:40:50 PM Roberts Richard Ph.D. New England Biolabs Ipswich MA US NIH-funded Investigator
Comment Topic: Open Access
Comment: The move to mandate deposition of NIH-funded publications is long overdue. Our ability to conduct research depends completely on having complete access to the published work of other scientists. At present this is often not possible without spending a great deal of money. It has always seemed strange that the public, of whom I am a part, does not have free access to the results of the research that we have paid for through our taxes. Instead, as a research scientist I have to pay to publish my work, pay to read it and am expected to provide peer review for free. Even the one year period of restricted access is far too long in my opinion. Papers should be made available to the research community and the public immediately. It must also be made available in a form such that I can download it and search it using my own data mining software, not the rather limited options provided by a publisher.

03/12/2008 at 07:58:43 PM Emery Sean PhD University of New South Wales, Australia Sydney NSW Australia NIH-funded Investigator
Comment Topic: Timely access to clinicla trial data and transparency regarding access to tissue repositories
Comment: Many groups conduct separate but parallel randomised clinical trials with similar interventions. Decisions regarding major changes to ongoing protocols following scheduled or unscheduled DSMB reviews or normal completion of studies can often exert profound effects on other studies. Often the safety and well being of participants in the parallel studies cannot be properly safegaurded if there asymmetric release of data. The sorts of detials required to understand the basis for changes to ongoing trials are not adequately addressed in NIAID press releases. There is an urgent need for timely release of pertinent data to other trial groups when major decisions are made regarding premature or scheduled termiantion of randomised clinical trials.

Tissue repositories linked to informative clinical datasets generated during the conduct of prospective clinical research projects are an invaluable perhaps unique resource. They are under utilised - perhaps in large part because their existence is not adequately or effectively communicated. This clearly leads to enormous redundnacy and repetition. Mechanisms should be developed to ensure effective and efficient communication of tissue repositories (existence, inventories, mechanisms of access) arising from public sector funding to research groups.

03/12/2008 at 07:18:09 PM Hubbard Tim PhD Wellcome Trust Sanger Institute Hinxton Cambridgeshire UK NIH-funded Investigator
Comment Topic: supporting policy
Comment: As an externally NIH funded researcher, I fully support the implementation of this policy.

As a genome annotation database provider, I particularly support the move to open access as it offers the chance to discover links between publications and database symbols such as gene names, via text mining and to build web links to the point within the document where this is discussed.

I believe that this and other web based integration around open access text will improve the efficiency of science by creating a new competitive market of processing, sumarizing and presenting textual information to scientists. This will ensure they learn about relevant discoveries sooner and avoid duplicating existing research needlessly etc.

Best wishes,

Tim Hubbard Head of Informatics PI, NIH ENCODE annotation scale up project Wellcome Trust Sanger Institute

03/12/2008 at 04:05:35 PM Yunger Libby PhD Sigma-Aldrich Corp Saint Louis MO US Other
Comment Topic: Open Access
Comment: I applaud NIH for asking that reports of publicly funded research be easily available to other researchers (and to the public)- after all, we paid for it via our taxes. Many industrial organizations no longer have libraries and ask their scientists to search and access the scientific literature via PubMed, HighWire and other internet sources. You would probably be amazed by the number of review articles that are based only on the information available in abstracts! This does a huge disservice to other scientists reading those papers. In my own case, Sigma-Aldrich does buy access to some journals, but only those used by a large number of our staff. One of my responsibilities is to search the literature for trends in nutrition and cancer research, to write reviews for our customers, and to make recommendations regarding updates to our product line to support these research areas. Generally I have NO access to important articles in these research areas because 1) nobody else at S-A has need of these journals and 2) the needed journals are not open access, even though much of the research has been publicly funded through NIH. It is usually possible to get e-versions of the papers directly from the researchers, but that is a cumbersome and unreliable process, and sometimes the papers are not made available in a timely fashion. I refuse to pay for access since too often in the past I have paid $15-$25 for access to a paper that turned out not to be useful. Scientists PAY to have their papers published; publishers greatly increase their own expenses by refusing to sell internet-only subscriptions to their journals. Pay-per-view for old literature is just another cash cow for the publishers. I would support letting the publishers have a 6 month "pay per view" period for research papers to recoup their costs, but after that time all articles should be open access. That way publishers could still make money without gouging the researchers and their institutions.

03/12/2008 at 03:30:36 PM Turner Erick M.D. Oregon Health & Science University; Portland VA Medical Center Portland Oregon US Representative NIH Funding Recipient Organization
Comment Topic: transparency for the sake of true scientific advancement
Comment: I am the lead author of a Jan 17, 2008 article in the New England Journal of Medicine titled "Selective Publication of Antidepressant Trials and Its Influence on Antidepressant Efficacy". Our study showed that the true efficacy of this drug class is less than what has been portrayed in medical journals. This is because of a combination of nonpublication of negative results and "spin".

I believe strongly that it is the best interest of the public health to have a clear and unbiased picture of the results of all clinical trials. If investigators can pick and choose what to publish, they will certainly be tempted to find reasons not to publish negative results.

But we need to know the bad news as well as the good news. As US taxpayers, we deserve the right to know the fruits of our investment, even if the "fruit" is not as sweet as what we had imagined.

Otherwise, we will be living in a polyannish world in which the only results that get disseminated are ones that fulfilled the investigator's hope.

When negative studies don't get published, future investigators may embark on the very same study, not knowing that they may be investing their time and additional government money into a blind alley.

03/12/2008 at 03:15:25 PM Schaffer Joseph none none Luling TX US Other Member of the Public
Comment Topic: NIH funded public access mandate
Comment: I support this mandate, in fact would like to see it extended to be made available to anyone in the public, whether professional or not, and since it is in the public interest be provided at no cost, or at least the minimal cost of maintaining it for availability on PubMed.

03/12/2008 at 02:36:19 PM Priestly Beatrice MLS Projected MBA summer 2008 Long Branch Public Library Eatontown New Jersey US Other
Comment Topic: Agree with proposal for posting on Pub med within 12 months
Comment: I agree with the NIH proposal that research be posted to PUB Med within 12 months of publication. Research is often extrememly expensive to get a hold of if it is possible at all. it is quite difficult in a public library with lack of funds for expensive databases. And i am sure the widen availability of the data would benefit those considering further research and the public whom we all ultimately serve. thank you to all parties who have come together to bring this proposal to the table. it makes sense and allows for publishers to make money on the critical first 12 months of publication time period. when it comes to research we all stand on the shouldiers of giants before us. how high up into the sky would we reach if we all had a leg up to great heights. i am not just talking about advancing the next researcher down the line I mean we would be contributing to advancing society as a whole. I think all will see great advances for mankind come out of this proposal. tahnks you for yur time and attention. i speak as an author, a librarian researcher and a member of the public. thsnk you.

03/12/2008 at 01:13:10 PM Robinson John Ph..D. Govt, laboratory but speaking as a Private citizen Abbotsford British Columbia Canada Other Member of the Public
Comment Topic: Open Access-Journals
Comment: I use scientific journal articles each and every day in my job as a veterinary diagnostic virologist. Often publications are NOT available to me because we do not have funding to purchase these articles at what I consider to be exhorbitant fees. The open access policy is a very important next step in making extremely valuable information available to everyone whether they work in a scientific endeavor or not. We cannot afford to allow the publishing industry to dictate who is or isn't allowed important information. Research is based on knowledge and research moves our world forward in medicine and all areas of science. The more our knowledge base increases and is free to all mankind the greater our progress in solving the world's problems. The information explosion via the internet has proven that and now it's time to be able to freely call up all information related to scientific research and especially research funded by the taxpayers of the United States and Canada through their government agencies.

03/12/2008 at 12:57:37 PM Hart Anne Ph.D. MGH and Harvard Medical School Charlestown MA US NIH-funded Investigator
Comment Topic: NIH Public Access Policy (4/7/08)
Comment: I strongly support open public access to all published results of scientific studies funded by the government. The policy requiring PubMed Central deposition of published results within a year is entirely reasonable and should be implemented immediately- or at least in April as scheduled. There should be no delay. As an active researcher and educator, the lack of access to published research is a constant drag on my efforts.

03/12/2008 at 12:53:39 PM Nalin David M.D. Retired director, Merck Vaccine Division W.Chester PA US Other
Comment Topic: NIH New Public Access Policy
Comment: I fully support the new NIH Public Access Policy, which will help speed access to important and innovative medical research data and will enhance the speed of research progress as well as making publicly funded research available to the public in the most efficient and facilitated manner.

David Nalin, MD

03/12/2008 at 12:50:00 PM Vickers Andrew PhD Memorial Sloan Kettering Cancer Center NY NY US NIH-funded Investigator
Comment Topic: Letter in support of new regulations
Comment: To whom it may concern

I am fully supportive of the new regulations that research paid for by the US public should be available to the US public. I am somewhat surprised to hear that certain groups with a clear self-interest (e.g. publishers) are trying to block the regulations. Whatever the reasons they give for this must surely be a smokescreen: it is ridiculous to think that science or the public interest could best be served by blocking access to research findings.

best

Andrew Vickers

03/12/2008 at 12:36:33 PM STEINHARDT RICHARD PHD UC BERKELEY BERKELEY CA US NIH-funded Investigator
Comment Topic:  OPEN ACCESS IS ESSENTIAL
Comment: OPEN ACCESS TO RESEARCH RESULTS IS ABSOLUTELY ESSENTIAL TO RAPID SCIENTIFIC PROGRESS. THE PROFITEERING OF A FEW MEGA PUBLISHERS SHOULD NOT BE ALLOWED TO IMPEDE PROGRESS.

03/12/2008 at 11:07:09 AM McMahon Martin PhD UCSF Comprehensive Cancer Center San Francisco CA US NIH-funded Investigator
Comment Topic: Open access scientific publishing
Comment: I write in strong support of the proposed new NIH policy on open access publishing. Open access publishing is an important new development that allows free and timely access to research funded by the NIH. Despite the continued value of the traditional model of publishing in private sector run journals, it has always seeemed incongruous that research funded by the public purse should then not be made freely available to the public-at-large who funded the research. Moreover, the policy of publishing houses claiming copywrite on publicly funded research seems entirely inappropriate. Furthermore, open access publishing positively contributes to the advancement of science, it serves the public--enabling discovery and speeding new treatments and cures for human disease. In addition, it leverages the public investment in the NIH to deliver better public health. Open access further keeps the USA in step with other countries such as the UK who have recently enacted similar open access publishing polices. Finally, open access democratizes teaching and learning--providing new resources for scientists to use in new and innovative ways.

03/12/2008 at 10:27:59 AM Gross Liza B.S. Public Library of Science san francisco ca US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: NIH Public Access Policy
Comment: I urge you to go forward with the planned April 7 implementation of the NIH public access policy without delay. While I believe NIH should require immediate access to research that is funded by US taxpayers, at the very least, the 12 month requirement must be implemented as soon as possible, because it will accelerate scientific discovery and thus benefit public health by speeding development of new treatments and cures.

But most importantly, the NIH has a responsibility to the taxpayer that funds its research; it is unacceptable for members of the public to have to pay to access the results of research they funded.

03/12/2008 at 10:14:31 AM Papavasiliou Nina PhD The Rockefeller University New York NY US NIH-funded Investigator
Comment Topic: NIH public access policy
Comment: Lack of open access constitutes a double burden on the US taxpayer, who a) invests in the NIH (and the vast majority of science in the US is funded by the NIH) and b) has to pay for access of what their taxes have helped produce! It is by now clear (to the unbiased eye) that open access will not sink publishers - so I think we should all fully support the bill and its immediate implementation.

03/12/2008 at 10:04:32 AM Gladfelter Amy Ph.D. Dartmouth College Hanover NH US Representative NIH Funding Recipient Organization
Comment Topic: Public access policy
Comment: I am a new investigator not yet funded by NIH but seeking funding. Ensuring open access to journals is an ethical responsibility of NIH and effort must be taken to make science funded by the public, available to the public. What will not change in this new rule is the actual cost of publishing. In making open access the law, publishers will likely transfer the costs of publications to investigators that may have been in the past recovered through subscriptions. This financial reality will have to be addressed in grant awards and in some sense the NIH will accept a burden of a financial cost associated with publishing. Nonetheless, the publication is as important as funding the work itself so this is a necessary element to add to the budget.

03/12/2008 at 09:50:30 AM Crusio Wim PhD Centre National de la Recherche Scientifique Talence N/A France NIH-funded Investigator
Comment Topic: Open Access policy
Comment: As an editor of several scientific journals (both Open Access -OA- and "classical") and as a referee, I get to see many manuscripts. I am really not interested in seeing even more manuscripts and have therefore yet to use PubMedCentral. I have a strong preference for the final publisher-corrected and -formatted PDF of an article. In my opinion, the creation of the PubMedCentral database is a waste of money and effort, duplicating the existing online platforms that every major publisher now has in place. It would be much more effective if NIH would provide grantees with funds to permit them to pay the publication fees that OA publishers are charging.

However, it should be realized that OA publishing will, in the final count, cost more to the academic community than the current system (because, for example, industry is a relatively larger consumer of than contributor to the scientific literature). OA publishing will only be sustainable if funded researchers obtain additional funds to defray publication costs and simultaneously a just mechanism is put in place to ascertain that unfunded researchers will still have the possibility to publish their results. Without the latter, much original research would get lost to the community, to the detriment of these researchers and, in the end, scientific progress.

A final concern is that under the OA model, it is in a publisher's interest to publish as many manuscripts as possible. In the classical publishing model, editors are constrained by their page-budget, leading to a heavy selection of articles for publication. In OA publishing, thresholds are definitely lower. Whether this will lead to lower scientific standards in the future is something that is difficult to predict at this point, but the dangers are clear.

03/12/2008 at 09:31:30 AM Abraham Edathara Ph.D. University of Arkansas for Medical Sciences Little Rock Arkansas US NIH-funded Investigator
Comment Topic: NIH Public Access Policy
Comment: Enhances the advancement of science Provides a direct return on investment of public funds in NIH Keeps the United States in step with other countries

03/12/2008 at 09:30:31 AM Futrelle Robert PhD Computer Science, Northeastern University Boston MA US Other Member of the Public
Comment Topic: Open Access aids research and the public
Comment: I have been funded to do research (mostly by NSF) and have published about 60 papers over the last 30 years, so I understand research and publishing. Though a Biology faculty member at U. Illinois for ten years, my research today is on knowledge extraction from the Biomedical literature. The goal of the work is to build far better systems than we have today for the retrieval of important content, both the text and graphics content. But with the great majority of the literature residing behind the walls set up by commercial publishers, it is impossible to mine the full text of published research papers. The publishers are reluctant to adopt the modern approaches that I and others are developing, because all their attention is focused on the bottom line. Fortunately, BioMed Central makes freely available some 100 million words of text - all of the papers they publish, as well as the 250 thousand figures contained in the papers. These form the basis of my research.

But my most serious concern is the lack of access to health-related research by physicians and patients. I can walk over to Harvard's Countway Library and for $35 a day have excellent access. That is no solution, and certainly an impossible one for someone in a rural area of the US, far from any source of medical information, but suffering from a life-threatening medical condition.

In conclusion, for the health and well-being of our nation, it is important to make taxpayer-funded research on Biology and Medicine freely available to our citizens.

Thank you

03/12/2008 at 09:27:31 AM alberola-Ila jose md, phd oklahoma medical research foundation oklahoma City oK US NIH-funded Investigator
Comment Topic: open access timing
Comment: I think open access is a very positive development, which serves public health and facilitates learning and research, especially in small research institutions, and developing countries. I only wish the time limit to make research freely available was much shorter. One year is too long!

03/12/2008 at 09:27:12 AM Gluud Christian MD, DrMedSci Copenhagen Trial Unit Copenhagen Denmark Denmark Representative NIH Funding Recipient Organization
Comment Topic: NIH Public Acess Policy
Comment: The proposed NIH policy should become the norm for all clinical research as the transparency positively contributes to the advancement of science.

In this way it serves the public health—by enabling discovery, speeding treatment, and cures of diseased people.

It makes the USA as a front runner compared with a number of other countries who have not yet enacted similar polices - but it must come to all.

03/12/2008 at 08:43:23 AM Mullaly-Quijas Peggy PhD Univesrity of Missouri - Kansas City Kansas City Missouri US Other
Comment Topic: NIH Public Access Policy
Comment: This new policy will be a boon for the researchers and clinicians I work with. To ensure the great research funded by the federal government is readily available without an additional cost for the individual needing that information will improve the dissemination of information needed for teaching and research. It will further the work of the University. And most importantly, lives will be helped (maybe even saved) with the access to this important research. I will be helping the researchers in submitting their manuscripts to PubMed Central, and offering training to those who which to do it themselves.

03/12/2008 at 08:18:29 AM Ryley James Ph.D. http://www.FreePatentsOnline.com Perry Hall MD US Publisher (including Commercial Organizations, Professional Societies and Journal Editors)
Comment Topic: Policy needs to address pre-existing research also
Comment: While the policy as it stands is certainly a step in the right direction, without access to pre-existing publications this policy does not serve the public good by providing Public Access to a *comprehensive* set of documents.

I strongly suggest that the policy apply to all documents which have been published over X months ago, not just documents published after the policy goes into effect.

I realize that legally, legacy documents are a somewhat different issue than newly-published documents. But, certainly this can be worked out with the copyright holders as part of the overall plan.

NIH is in the driver's seat here; they can always prohibit publishing of any future NIH-funded manuscripts by copyright holders who do not agree to reasonable terms on the legacy documents.

Without such terms for legacy documents, NIH is relegating Public Access to a database that starts in 2008. Can any researcher reasonably use such a database in the course of their work with confidence that they have knowledge of all the relevant literature? Of course not.

03/11/2008 at 06:00:47 PM Aickin Mikel PhD University of Arizona Tucson AZ US NIH-funded Investigator
Comment Topic: Waste of resources
Comment: The NIH can easily expand public access to publicly-funded research in two meaningful ways. (1) Guarantee that every NIH funded grant has access to a means to publish its results, by providing a publication-of-last-resort facility. Require every PI to make at least one submission, either to a regular journal, or failing that, to this publication-of-last-resort facility, within a reasonable time after the grant terminates. (2) Make the raw data of any NIH funded study available to any qualified researcher, consistent with confidentiality protections, but without any additional conditions. It is not sensible that vast amounts of publicly-funded research data are being casually allowed to slip into oblivion, when they could be used to improve biomedical research.

Thirdly, abandon this absurd, redundant publication of research results burden. The NIH obviates the requirement to deal with existing copyright law by pitting the researchers against the journals. The fundamental problems in biomedicine at the moment have nothing to do with availability of published articles. They have to do with (1) non-publication by funded studies, and (2) lack of access to raw data.

We should try to find a way to divert resources from plausible but useless programs to disseminate information, into actual disseminations of actual information, where it will do some good.

03/11/2008 at 05:54:43 PM Ford Gail BA UC Berkeley Berkeley CA US Representative NIH Funding Recipient Organization
Comment Topic: NIH mandate for open access
Comment: The NIH mandate to post NIH-funded research for immediate open access is a good decision that

* positively contributes to the advancement of science * serves the public--enabling discovery, speeding treatment, and cures * leverages the public investment in the NIH to deliver better public health * keeps us in step with other countries who have recently enacted similar polices * democratizes teaching and learning--providing new resources forscientists to use in new and innovative ways.

03/11/2008 at 03:27:26 PM Wynne Richard B.Com Private individual with 20+ years technology and publishing experience Brookline MA US Other Member of the Public
Comment Topic: Rebuttal of frequent assertions
Comment: Assertion 1: The taxpayer pays for the development of the content in a scholarly manuscript so it should be accessible to the public at no charge.

Rebuttal 1: If the assertion is valid then ALL research output including books, patents and discoveries should be made available for free. Publishers add value, and should be entitled to do so, in the same way that countless other individuals and organizations are able to build businesses around Government funded research. The taxpayer funds many activities and services that are not provided to the public for free.

Assertion 2: In the Internet age the marginal cost of delivering content is almost zero, so scholarly manuscripts should be disseminated for free.

Rebuttal 2: Controlling access to content acts as a proxy for access control for value added capabilities (e.g. specialized search engines, discovery tools, branding etc) provided by publishers. Free access, undermines this revenue recovery mechanism and will drive out innovation from publishing.

Assertion 3: Authors and scientists work for “free”, so the content should be free.

Rebuttal 3: Just because the raw ingredients of a product are extremely low cost, does not entitle the Government to mandate free distribution. The cost of the ingredients used to make Coke are negligible (water and sugar), does that mean that Coke has to be provided to the public for free? In fact, publishers invest heavily in branding and marketing that helps to connect appropriate readers with appropriate content. Without a financial incentive this important work of branding and marketing will disappear.

03/11/2008 at 02:55:25 PM Harnad Stevan PhD Universite du Quebec a Montreal & Southampton Univefrsity Montreal Quebec Canada Representative NIH Funding Recipient Organization
Comment Topic: Universities can Monitor and Reinforce Compliance With NIH Mandate
Comment: Universities (and research institutions) are the natural ones to monitor compliance with the NIH Open Access self-archiving mandate -- as well as to reinforce it with institutional self-archiving mandates of their own. The universities receive the indirect costs and overheads from NIH grants; it should be made part of the institutional fulfillment conditions for receiving NIH funding that the university must ensure the self-archiving of the published output. But to make this part of the university's natural work flow, and to integrate it with the university's own self-archiving mandates (like Harvard's), and the monitoring of compliance therewith, the locus of the deposit must in all cases be the university's own Institutional Repository. That means each university monitors deposit of all of its research output in one repository: its own.

Optimize the NIH Mandate Now: Deposit Institutionally, Harvest Centrally http://eprints.ecs.soton.ac.uk/15002/

03/11/2008 at 02:45:25 PM Rohlfing Torsten PhD SRI International Menlo Park CA US NIH-funded Investigator
Comment Topic: Policy scope needs clarification
Comment: The public access policy is unclear as to what types of publications it applies to. According to Division G, Title II, Section 218 of PL 110-161 (Consolidated Appropriations Act, 2008), it applies to " final, peer-reviewed manuscripts." However, the instructions and FAQs on the NIH website refer more specifically to "journal articles" (see http://publicaccess.nih.gov/FAQ.htm#c1). These two are not the same.

It should be clarified whether the policy applies only strictly to journal articles, or whether it also extends to peer-reviewed conference papers.

In the latter case, it needs to be further clarified under what circumstances a conference paper is considered peer reviewed. Does this cover only papers that were reviewed in full, or also papers for which only an (extended) abstract was reviewed, but not the final paper as such (example: annual SPIE Medical Imaging conference).

03/11/2008 at 02:38:55 PM Harnad Stevan PhD Universite du Quebec a Montreal & Southampton Univefrsity Montreal Quebec Canada Representative NIH Funding Recipient Organization
Comment Topic: Integrating NIH Mandate with University Mandates
Comment: Universities (and research institutions) are the research providers, in all fields (not just biomedicine). To ensure a synergy between the NIH self-archiving mandate for research in NIH-funded biomedicine and complementary university self-archiving mandates for research in all disciplines (funded as well as unfunded) it would greatly strengthen the scope and influence of the NIH mandate if it stipulated that the locus of direct deposit should be the researcher's own Institutional Repository -- from which PubMed Central (and any other relevant central repository) could then harvest it.

Instead requiring direct deposit in PubMed Central greatly restricts the benefits of the NIH mandate, and complicates instead of facilitating university mandates for self-archiving for all the rest of research output. It makes incomparably more sense to deposit institutionally and harvest centrally, whenever/wherever desired, rather than mandating that researchers deposit willy-nilly in repository after repository. Institutional deposit mandates systematically converge; central deposit mandates diverge and even get in one another's way.

Se:How To Integrate University and Funder Open Access Mandates http://openaccess.eprints.org/index.php?/archives/369-guid.html

03/11/2008 at 02:36:25 PM Salo Dorothea   University of Wisconsin Madison WI US Representative NIH Funding Recipient Organization
Comment Topic: Compliance and curing non-compliance
Comment: It would be very helpful for PIs, grant administrators, librarians, and others involved in the process of compliance with the NIH Public Access policy to know how the NIH plans to measure compliance with the policy, and whether there will be opportunity for instances of non-compliance to be cured. This question is of particular importance with respect to PIs who wish to comply, but are prevented from doing so by intransigent publishers.

03/11/2008 at 02:32:59 PM Salo Dorothea   University of Wisconsin Madison WI US Representative NIH Funding Recipient Organization
Comment Topic: Dual-version problem
Comment: The author's final peer-reviewed manuscript may differ in important ways from the published article. This raises the spectre that the version in PubMedCentral may differ enough from the published article to constitute inaccuracy on the part of PMC. What provision is the NIH making to ensure that material in PMC is accurate -- or if not accurate, can at least be corrected?

03/11/2008 at 02:29:40 PM Salo Dorothea   University of Wisconsin Madison WI US Representative NIH Funding Recipient Organization
Comment Topic: Recalcitrant publishers
Comment: A serious flaw in the NIH Public Access policy is the absence of incentive for publishers to permit PMC archival, as well as the absence of consequences for recalcitrant publishers. I urge the NIH to compile and make public a list of journals and publishers who refuse to permit NIH grantees to comply with the Public Access policy. Such public exposure (and the resulting poor publicity) should convince many publishers to accede to PMC deposit.

03/10/2008 at 07:20:38 AM Johnson Richard BA Inspira Strategic Bethesda MD US Other Member of the Public
Comment Topic: Support for NIH Public Access Policy
Comment: I enthusiastically welcome the revised Public Access Policy (NOT-OD-08-033) developed by NIH in response to Congressional direction.

The range of policy options have been thoroughly discussed and weighed since at least 2004 in Congress, at NIH, in the scientific community, and in public fora. Support for public access has been broad and opposition has been limited to a relative handful of prosperous publishers. NIH has taken a thoughtful, conservative approach, embracing a mandatory policy only after the failure of a voluntary approach. It has gone to great lengths to consult with the range of interested parties and the resulting policy fairly balances their preferences with the public interest.

Vested interests must not be allowed to further stall NIH public access.Prompt NIH action to implement the newly announced policy will ensure that NIH-funded research findings are available to all. Any delay will only hold back scientific advancement and impede the public’s access to high-quality health information. The April 7, 2008 implementation date announced by NIH must not be held up.

Particularly in the current, difficult economic climate, taxpayers have a right to expect that they are getting their money’s worth from the federal investment in research. Universal access to NIH research will unlock the full health, economic, and social benefits that motivate NIH appropriations. Any delay will reduce the return on public investment.

Total Comments = 433

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