[Ip-health] Wall Street Journal: Medical Publishers Propose Data Sharing

[Thiru Balasubramaniam]

Medical Publishers
Propose Data Sharing

Industry Aims to Head Off
Government Bid to Open Up
Scientific Studies to Public

By *BERNARD WYSOCKI JR.*
*Staff Reporter of THE WALL STREET JOURNAL*
December 8, 2004; Page D6

Alarmed by a government proposal to make biomedical journal articles
more widely and freely available, the scientific publishing industry has
crafted an alternative plan to distribute some of its content free of
charge to consumers.

A consortium of leading technical publishers is expected to announce
today a plan to allow three patient-advocacy groups to select hundreds
of timely journal articles, and to make the content available through
the groups' Internet sites.

The organizations are the American Cancer Society, American Diabetes
Association, and American Heart Association.

The publishers include the Elsevier unit of *Reed Elsevier *PLC, John
Wiley & Sons, Blackwell Publishing, and others. The consortium, called
patientINFORM is expected to launch the project in the spring.

Under the plan, the three patient-advocacy groups would have a free hand
in selecting articles, making original text available to the public,
along with interpretative text supplied by experts at the heart,
diabetes and cancer associations. The groups will keep adding fresh
content from the publishers over time. The publishers, who aren't
charging the associations, say they consider this a pilot project that
could be expanded to other organizations.

"We're getting a bad rap for not having original research information
available to the general public," says Brian Crawford, a vice president
at Wiley who helped create the new plan.

The industry plan, however, would make only a small portion of
taxpayer-funded biomedical research available to the public, which is at
the crux of the dissemination proposal put forward by the National
Institutes of Health in September.

NIH Director Elias Zerhouni said that scientists with NIH funding should
make their work available on a free NIH Web site after a six-month delay.

Many commercial publishers vigorously have opposed the NIH plan, fearing
loss of revenue. They sell print versions of the journals, as well as
online versions in both bulk subscription and on a per-article basis. An
annual subscription to one of these journals costs between $200 and $6,000.

Several patient groups, including the American Diabetes Association,
have also opposed the NIH plan, arguing that as nonprofit publishers,
they, too, could suffer.

Peter Banks, publisher at the diabetes association, says the proposed
NIH project "doesn't go far enough" because it would leave patients
"wading in a sea of undigested information." He says patients would gain
enormously from having the advocacy groups organize and add to the raw
research articles.

But since the NIH drafted its proposal it has since received more than
6,000 comments, many of them supportive. Dr. Zerhouni has held a number
of meetings with publishers. After hearing their complaints, he softened
his stance, from "requiring" to "requesting" that articles based on
NIH-sponsored work be put on the agency's PubMedCentral Web site. But
Dr. Zerhouni has been skeptical of the publishers' arguments about lost
business.

In a recent interview, Dr. Zerhouni said it's rare for a journal to have
more than 30% to 40% of its content generated by NIH-sponsored work, so
that only a portion of the articles would be expected to be made public.
"If you offered to show one-third of the Olympics, six months later on
tape, would people not watch the Olympics?" he asks.

The NIH is expected to announce its final publication plan within a few
weeks, and hasn't said whether it will modify its proposal further.

*Write to* Bernard Wysocki Jr. at bernie.wysocki@wsj.com
<mailto:bernie.wysocki@wsj.com>^1

	URL for this article:
http://online.wsj.com/article/0,,SB110245962444893713,00.html