The push for public access to journals
For David 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.”
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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 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 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 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.