Medical site standards sought

Snake oil or sound advice? When people seek medical information on the Internet, it's hard to know what they'll get.

That according to an editorial published today in the Journal of the American Medical Association.

The authors, which include American Medical Association employees and editorial staff of JAMA, speak only for themselves. They are calling for medical Web sites to adhere to four voluntary standards: providing information about authorship; attributing information; disclosing Web site ownership and affiliations; and dating information.

Web sites offering instant access to medical information are virtually exploding on the Net with everyone from drug companies to individuals putting up Web pages. Some companies' motive is to publicize a product; others want to help people who might not have access to the information. And no one will refute that there also are those who mount sites to make a buck off the hapless Netizen or to provide controversial information.

It is too often difficult for average users to discern the kind of information they're getting, the editorial says.

"The problem," states the editorial, "is not too little information but too much, vast chunks of it incomplete, misleading, or inaccurate, and not only in the medical arena...In such an environment, novices and savvy Internet users alike can have trouble distinguishing the wheat from the chaff, the useful from the harmful."

Robert Masacchio, one of the authors, said the editorial was the result of two years' scrutiny of medical information online. The authors discovered that people tended to believe what they read on the Internet, though it wasn't always accurate.

"If they follow misinformation or if something is confusing, it may cause something that's detrimental of their health," he said.

"I don't think they should be banned," he said. "I believe in freedom of speech. What we're trying to do is educate. Just like anything else, [consumers] have to be wary and be responsible themselves. All information is not good information.

The editorial makes the point that "At first glance, science and snake oil may not always look all that different on the Net. Those seeking to promote informed, intelligent discussion often sit byte by byte with those whose sole purpose is to advance a political point of view or make a fast buck."

But regulating health sites on the Net could be a tricky prospect.

Sherry Messick says she generally agrees that people should use guidelines when they design Web pages. Messick designed her own Web page with detailed information and links to other sites people who suffer from her rare disease, scleroderma.

Nobody should ever dispense medical advice over the Net based on written information only, she feels. But she also worries that voluntary guidelines could lead to legal regulations that would end up having a devastating effect on sites like hers.

"Some of the requirements are a little bit too tight," Messick said.

She worries regulations could wind up restricting information that many, including herself, have found to be invaluable.

The group that wrote the editorial hopes that adherence to voluntary standards will help stave off true governmental regulation. They also want to spur discussion.

"What we want to do is start the debate and raise it both with consumers and also with organizations, saying if they're putting information out there they should be responsible," Masacchio said.

The editorial says "we applaud the current discussions about quality and hope that they will lead quickly to widespread agreement on a set of core standards that information producers can choose to follow," they state. "We are not, however, calling for a single or centralized review process, institution, or agency, except to any extent that appropriate laws or regulations might require. We believe such an approach is neither desirable or realistic, since the Internet is a decentralized, global medium."