Academic research leaders meet with NIH's Zerhouni

November 16, 2004

On Monday, November 15, the final day before the close of the public comment period on their proposed guidance, "Enhanced Public Access to NIH Research Information", Dr. Elias Zerhouni, NIH Director, met with Dr. Mark Kamlet, Provost at Carnegie Mellon University, and Rick Johnson, director of the Scholarly Publishing and Academic Resources Coalition (SPARC), an alliance of leading academic and research libraries.

The NIH proposal is found at

"Clearly, Dr. Zerhouni is listening to all voices in this debate on how to expand access to the published results of NIH funded science. He knows that NIH's primary responsibility is to serve science and to improve human health," said Kamlet.

"From the perspective of one of the nation's finest research institutions, I emphasized that we feel that the academy, not the commercial publishing industry, is NIH's primary partner in the conduct, scientific review, and dissemination of research. Today we are frustrated by restricted access to research, which is choking the system. NIH is addressing this challenge intelligently without threatening publishers' livelihoods."

Kamlet added that, "For five years, the AAU has been working on this, and finally NIH and Dr. Zerhouni have the opportunity to move a solution forward."

Johnson reinforced Dr. Kamlet's views and both stated they believe that a six-month delay is more than sufficient to avoid any disruption of publishers' ability to recover their costs. They urged NIH to sustain a recommendation that already supports a reasonable compromise with publishing interests.

"NIH's plan to capture authors' final peer-reviewed manuscripts has raised questions in some quarters about having different versions of an article available from NIH and a journal," noted Johnson. "The fact is, publishers have it in their power to address these concerns by depositing the published article in the NIH archive. But if they don't choose to do so, it isn't a showstopper. There are practical ways to mitigate any ambiguity of having two versions. There is no legitimate reason for such concerns to impede the NIH plan."

Though unable to take part in today's meeting, Sharon Terry, President and CEO of the Genetic Alliance - a patient advocacy organization embracing 600 nonprofit groups - held a news briefing last Thursday (November 11) to enthusiastically support the NIH proposal too (excerpts from Sharon Terry's comments below):

"We are told that the information is accessible to us and it is in peer-reviewed journals which are good vehicles or media for this information. But what we find is that information is very difficult for us to access, and in some cases impossible.

"We are told that we could go to medical libraries. Those are not always easy to get to or accessible from Middletown, Ohio, or [wherever patients] live.

"We are told we can get these articles by the article from the publisher. Often the price on those articles is $35, $25, onerous when you are looking at the number of articles that we need.

"We are also told we could obtain them from the public library. Our public library would love to give us that access but finds that very onerous as well.

"In the course of founding [the PXE International] foundation ... 10 years ago ... we found ... that not only did we have the burden of the disease that we had to deal with in our kids, but we had the burden of trying to find out about the condition.

"If we fast forward to today ... I'm helping 600 groups ... and I again had tremendous difficulty getting those articles and had to do essentially some end runs around the system.

"The ivory tower mentality of putting the fences around the information is something that we look forward to being dispersed soon.

"The professional societies have lobbied us patients pretty heavily saying, 'do you realize that this will be the demise of publishing as we know it, the peer reviewed process will be destroyed.' That is not at all on the table with this proposal. This is peer-reviewed journal articles being deposited in an open repository."

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