Open access to biomedical information on the internet and through other easily accessible electronic databases has created new opportunities for doctors and patients, but much of the information is subject to manipulation because the ordinary conventions of context and the reliability of provenance are constantly in question.
That was one of the major themes of "Freedom of Information," a conference held in New York's Academy of Medicine on 6 and 7 July, sponsored by BioMed Central, which publishes peer reviewed clinical research reports that are available through the internet.
"On the internet anything goes and that's all right," said George Lundberg, editor of the online medical website Medscape.com and former editor in chief of the journal of the American Medical Association. "But anyone can be an author and fake the whole thing. How do we filter that?" he asked.
One of the issues that came up during the conference was the contrasting benefits and pitfalls of making primary medical research available to consumers. Last year Harold Varmus, then director of the National Institutes of Health, proposed the creation of a complete on-line archive for all medical and biological research that would give everyone easy and 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.
Another theme was the increasing and sometimes dangerous availability of fictitious medical treatments through the internet. John H Renner, chief medical officer of HealthScout.com and president of the National Council for Reliable Health Information, said he was once able to buy "T Cells" on-line.
After purchasing the product, he called the company to report that he had inadvertently "taken the entire bottle" and a secretary told him: "Oh, they won't hurt you."
The biggest problem with obtaining health information from the internet is that it is not always easy to decide what is reliable. One panellist referred to a well publicised study that appeared in the professional journal Cancer. J Sybil Biermann and her colleagues at the University of Michigan found that one website reported the mortality for a certain type of bone cancer as 5%, while in reality it was closer to 75%. Such misinformation could be devastating, the panellist said.
More than 25 million people will use the internet to search for health information, says the Federal Trade Commission. Estimates vary at the number of medically related sites are on the web, but they number at least 100 000. Only about half these sites have their content reviewed by doctors.
Panellists agreed that the promise of the web is the promise of global medical information. But what searchers—some curious, some desperate—will find are the good, the bad, and the ugliest of the internet.
One medical editor who attended the conference said the danger is medical websites that would lead patients to diagnosis and treat their own conditions. "There's a reason why doctors go through years of training," said Ivan Oransky, editor of Praxis Post, a recently launched medical web magazine (http://www.praxis.mdwww.praxis.md). "It's called clinical experience. That's why peer reviewed websites are so important," he said.
Ultimately, most panellists agreed that it would be difficult to guard fully against those who were bent on disseminating false medical information or misleading consumers into purchasing "snake oil" medical treatments. "But the day you can regulate the internet is the day we have one world government," said Lundberg. "It's not going to happen anytime soon."
