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."