The push for public access to journals

[Guest guest]

From the Los Angeles Times January 17, 2005

The push for public access to journals

Patients and advocates want published results of government-funded studies at no

cost.

By Dee Ann Divis, Special to The Times

For Lipman, a seemingly esoteric debate over the public's access to

medical journals became more personal after he helped his father through a

medical crisis.

It began when Lipman noticed that the prescription drug his father was taking

for chronic leukemia left him anemic and weak. When Lipman asked his father's

doctor about the necessity of the drug, the physician insisted the treatment was

appropriate. He even sent Lipman summaries of articles from medical journals

supporting the treatment.

Some people might have let it go at that. But Lipman went searching for the full

text of journal articles, which left him more skeptical. He encouraged his

father to get a second opinion, and another doctor eventually recommended that

the leukemia medication be

dropped.

Lipman, a biotechnologist at the National Institutes of Health, had easy access

to medical journals at the NIH library. But many Americans don't enjoy such

access.

Most medical journal articles are not freely available to the public in print or

over the Internet. Access often is limited to subscribers, who must pay hefty

fees. And

most public libraries are more likely to carry People magazine than the Archives

of Internal Medicine.

Lipman wants to change this. He is helping to coordinate an effort to give the

public easier access to government-funded research published in medical

journals. The NIH is considering a proposal that would ask researchers to

provide a copy of each journal article they write about NIH-supported projects.

Those articles, which often are copyrighted and tightly controlled by the

journals, would be made available for free on the Internet through a permanent

archive.

There are tens of thousands of journals published worldwide, each with articles

on the latest discoveries and results of clinical trials of new drugs. The

journals are

expensive, however, with annual subscriptions sometimes costing hundreds, even

thousands of dollars. Because few people can afford to subscribe, many rely on

libraries for the articles.

But access to the information has been dwindling steadily. Prices have risen

steeply during the last decade, and libraries have been dropping titles to cut

costs.

Those who favor easing access to government studies published in journals say

the public has already paid for the research and shouldn't have to, in effect,

pay

again to see the results.

Journal publishers counter that the current system has worked well. Many say

they are allowing authors to post articles on their personal and institutional

websites. Publishers also point out they have invested profits back into the

system, making electronic publishing possible and creating databases that speed

new research. Publishers and scientists say a change in how journals are

published could hurt scientific organizations that depend on subscription fees

to

train new researchers.

The NIH is attempting to address some of the concerns on both sides. Under the

proposal the same articles submitted to the journals would be submitted

voluntarily to NIH after they have been peer-reviewed. Six months after initial

publication in the journal they would be made available, in their entirety,

through

PubMed Central, NIH's electronic repository. The repository would increase

access, but the delay would help maintain the journals' subscriber base and

protect the funding of the science societies.

NIH is expected to announce a decision soon. A public briefing scheduled for

Jan. 11 was postponed.

Should NIH decide to ease access, the range of what would become available is

enormous. Though it is often thought of as a center for studying rare disorders,

NIH funds research on subjects such as wisdom tooth extraction, vitamin

supplements and the use of acupuncture for lower back pain. Nearly 10% of

U.S. health and medical research receives NIH funding. Roughly a third of

NIH-supported research consists of clinical trials.

A shift toward public access would come at a time when more people than ever

are searching online for health information. Like Lipman, patients mine the

abstracts and articles to explore treatments. They search for new options and

find

details to help them sort out conflicting advice. Advocates insist that the

public,

particularly when motivated by family health concerns, can decipher complex

medical jargon and should have access to the full text of articles.

" We have a lot of really savvy patients out there who can read a journal

article, "

said Sue Friedman, executive director of Facing Our Risk of Cancer

Empowered.

Pat Furlong, executive director of the Parent Project Muscular Dystrophy and a

proponent of the NIH plan, also says more access would help doctors stay on

top of developments. She told attendees at an NIH meeting on Aug. 31 how her

son, a teenager with muscular dystrophy, died when he was given an inhalational

anesthesia in the hospital. Her family lived in a rural town and had limited

access

to a library with the latest medical studies.

" The physician did not have the access to the information he needed for my son

to survive, " Furlong told the panel.

" We've seen patient families come together and truly go in depth into

fundamental

research that relates to muscular dystrophy and genetic diseases of all kinds, "

said

NIH Director Dr. Elias A. Zerhouni. " … They come to us and say we would like

to have, at least at some point, access to the entire portfolio of the research

that

NIH does. "

Where to go for medical research/ Where to go for more information:

The National Library of Medicine offers a wealth of information on diseases,

therapies and clinical trials, along with a guide on how to track down

additional

information and evaluate it. Go to http://www.nlm.nih.gov , click on the link

" The Public, " then " NLM Guide to Finding Health Information. "

The National Health Information Center, an information referral service, helps

people contact the organizations best able to answer their questions. Go to

http://www.health.gov/nhic or call (800) 336-4797.

The Agency for Healthcare Research and Quality is a U.S. government agency

that evaluates medical research. For the latest information on prevention,

treatments and other research, go to http://www.ahrq.gov .

The Cochrane Collaboration

is an international network of people and organizations that analyze and

evaluate

medical evidence. For evaluations of studies, go to www.cochrane.org.

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