Every year, the U.S. federal government funds more than $29 billion in biomedical research through the National Institutes of Health (NIH). The research, which inspires about 80,000 individual articles (each year), is then published in journals that only subscribers can access. Doctors, scientists, patients, taxpayers, and health professionals are unable to access NIH-funded research without paying access fees that can reach $30 per article or over $23,000 for an institutional yearly subscription.
“Taxpayer access” – the principle that American taxpayers should have free, timely, public access to the results of publicly funded research – would change this, and put critical biomedical research into the hands of those who need it.
In the U.S., the NIH has been the first federal agency to champion a policy for public access to the critical biomedical research it funds, through its Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research, which was implemented in 2005. The NIH policy first requested eligible investigators to deposit copies of their final, peer-reviewed manuscripts into PubMed Central, so that they may be made publicly available twelve months after publication. (While agencies around the world, including the Research Councils UK and the Canadian Institutes for Health Research, have backed six-month embargoes, the NIH adopted a twelve-month window as a compromise with journal publishers who feared a loss in revenues).
The policy would accomplish three important goals for the NIH:
- ARCHIVE. A central collection of NIH-funded research publications preserves vital published research findings for years to come.
- ADVANCE. The archive is an information resource for scientists to research publications and for NIH to manage better its entire research investment.
- ACCESS. The archive makes available to the public research publications resulting from NIH-funded research.
After its first year in place, the voluntary policy attracted deposit of less than 5% of NIH-funded articles. Following review by a variety of panels, including the stakeholder-representative Public Access Working Group and the NLM Board of Regents, it was recommended that the NIH Public Access Policy be made mandatory for researchers, to ensure its success.
The shift to mandatory was codified with the Consolidated Appropriations Act of 2008, signed into law by President Bush on December 26, 2007. By law, the NIH was required to change its policy so that participation and deposit are mandatory for eligible researchers.
Even before the revised policy was implemented in April 2008, researcher participation rates shot skyward. After implementation, submission rates have reached 65%.
(Graphic from NIHMS Monthly Aggregate Submission Statistics at http://www.nihms.nih.gov/stats/index.html)
In a recent testimony before Congress, NIH Director Zerhouni demonstrated the undeniable and tremendous advances made possible when research is accessible and searchable:
“When viewing a report in NIH PubMed and PubMed Central databases, at the touch of a button we can link to papers that are determined to be related, as well as to papers that were actually cited. We can also link to related chemical structures, proteins, viruses, and other data, allowing us to make discoveries that advance science and even prevent deaths…”
For example, about three years ago, a child was hospitalized with an undiagnosed illness in Minnesota. The state health laboratory had isolated an unknown virus.
After determining the DNA code of the virus, laboratory staff used the internet to access the 55 million DNA sequences at NCBI and immediately found a match. The virus turned out to be the first polio case in the United States since 1999…
With these new life-saving tools, the main limitation on their use is the capacity to store and retrieve the data, given the extent to which data is being submitted. While today we are storing and retrieving only a fraction of the data and findings that could be available, the mandatory public access policy enacted last year will increase the scale of information that will be available from the library.
Despite these advances, despite the importance of taxpayer access to publicly funded research, and despite the long collaboration in the development of the NIH policy, there is a move to reverse this policy and prevent other U.S. federal agencies from ever enacting policies for public access to research. On September 11, U.S. House Judiciary Committee Chairman John Conyers (D-MI) introduced the “Fair Copyright in Research Works Act” (HR6845) to amend current U.S. copyright law and permanently disable public access to taxpayer-funded research in the United States.
HR6845 is broadly opposed by the majority of stakeholders, including thousands of academic and research libraries, hundreds of patient advocacy organizations, dozens of leading copyright scholars and attorneys, and 33 Nobel Prize-winners. Nonetheless, we expect this bill will be re-introduced in the 111th Congress and that attempts to undermine the NIH policy will continue.
Health professionals have a key stake in supporting free and open access to biomedical research in the U.S. Access to up-to-date, health-related information plays a crucial role in ensuring that you and your patients are as educated as possible about individual situations. Please, let Congress know you support public access and oppose HR6845.
Jennifer McLennan is the Director of Communications for SPARC (the Scholarly Publishing and Academic Resources Coalition). SPARC is co-founder and administrator of the Alliance for Taxpayer Access. Jennifer may be reached through firstname.lastname@example.org.
Thank you, Jennifer, for this guest post! Public access to articles goes to the heart of participatory medicine, or as I wrote recently, making institutions like the NIH less like a fortress. Anyone who doubts that the world has changed because of the internet should read the story of Edwin Murphy, who had to impersonate his doctor in order to read the risks and benefits of a medical procedure he was considering.
That being said, I also recommend reading Gina Kolata’s Primer on Medical Studies and checking out the graphic, How to Read a Medical Study (Skeptically).