Putting medical research on-line to give patients the information they need

June 29, 2000

A woman who carried out her own research through scores of medical journals to find out what was causing her infertility and repeated miscarriages will next week tell some of the world's leading scientists, publishers and librarians why medical research information should be made freely available on the internet.

After the birth of her eldest son, Jean-Hoffman Anuta, from Maryland, USA, suffered six miscarriages and then became unable to conceive. Jean decided to search the latest medical research in this particular field to find out more about her condition and to see what research was being done that might help. "Reading the latest medical research information gave me the confidence and knowledge to understand my condition," says Jean, "I learned what information was important to tell my doctor, and who the leading researchers in the fields of infertility and miscarriage were. Ultimately this lead to a cure."

Jean's access to publicly available research articles again proved vital in saving the life of her second son as her pregnancy hit complications at 8 weeks and again at 20 weeks. Further research and the resulting treatment with steroids, while being restricted to bed rest helped prepare the fetus for premature delivery (via emergency cesarean section) at 32 weeks.

Jean used Medline, the US Government's National Institutes for Health (NIH) abstract archive, to locate the research articles that were relevant to her disorders. The research articles then had to be obtained through libraries and, on the few occasions when they are available, on the Internet. By learning the terminology necessary to search the Medline archives, Jean was able to compile information from the world's leading authorities in her field of interest.

Last year, Dr Harold Varmus, then Director of the NIH proposed the creation of a complete on-line archive for all medical and biological research that would give free of charge access to the latest medical research. The scientific community has welcomed the prospect of using the Internet to provide fast and effective distribution of research findings, but the publishing industry has, with a few notable exceptions, yet to support the initiative fully.

Next week's conference at the New York Academy of Medicine, Freedom of Information: The Impact of Open Access on Biomedical Science, will bring together some of the world's leading scientists, publishers and librarians to discuss open publishing on the internet and how it will change the way biomedical science is used, communicated and done. Speakers at the conference will include Dr Varmus (President of the Memorial Sloan-Kettering Cancer Center), Dr George Lundberg (Editor in Chief of Medscape and former editor of the Journal of the American Medical Association) and Jan Velterop (Director of Publishing for Nature).

Dr John Renner M.D. from Kansas City, USA, President of the National Council for Reliable Health Information, will discuss the positive and negative aspects for making health information available on the Internet. "The Internet has multiple scientific and medical purposes and a variety of public perceptions," says Dr Renner, " Some of the Internet is so good, but other Internet health productions are more like very bad horror movies with terrible medical humor, misplaced anatomical parts, and very low scientific literacy."

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