Online advice: good medicine or cyber-quackery?
How physicians can work with patients who are going to the Net for medical information
From the December 1996 ACP Observer, copyright © 1996 by the American College of Physicians.
By Holly Epstein Ojalvo
Anyone with a computer and access to the Internet now can find information on just about any topic. Not surprisingly, health care is "the most crowded market in cyberspace," as the New York Times noted recently.
As more and more patients use their home computers to check on the latest health care news and get medical advice, physicians have an opportunity-some would argue a responsibility-to help patients judge infor-mation they find on the Net. To stay abreast of the kinds of information their patients are downloading, physicians are getting online themselves, serving on Web site advisory boards and even dispensing advice online.
But as the specters of misrepresentation and misinformation begin to haunt cyberspace, physicians may want to approach online medical information with a healthy dose of skepticism-and advise their patients to do the same.
Patient empowerment
Fortunately, many health care resources available on the Internet today are reputable: news reports, reprints from medical journals, clinical trials information and patient handouts. As a result, advocates say the new technology can empower patients, arming them with knowledge and enabling them to play larger and more informed roles in their own care.
Warner Slack, MD, co-director of Harvard University Medical School's Center for Clinical Computing, is a firm believer in what he calls "patient power." Dr. Slack, editor of MD Computing and an associate professor at Harvard, explained that computers can help educate patients about medicine and get them involved in clinical decisions. Ultimately, he said, this electronic form of patient power may help cut health care costs by helping reduce the number of doctor visits for minor maladies like sore throats, conditions that most lay people can diagnose and treat on their own.
Some popular resources are the provider-operated question-and-answer services that have begun to crop up on the Internet. They include medical powerhouses like Columbia University ("Go Ask Alice" is an advice column for students) and trendsetters like HotWired ("Ask Dr. Weil" offers alternative medicine advice).
Danger ahead
But getting medical information from the computer also poses clear dangers for consumers-and some serious implications for physicians. If patients delay seeking medical attention, for example, the burden on physicians to treat them may increase. As the Internet population continues to grow, steering patients away from sources of bad information may one day become a standard part of preventive medicine.
What can you do if you know your patients are scouring the Internet for medical information? For one, advise them to check their sources' credentials. Experts say that opportunities for misrepresentation abound in cyberspace, particularly because consumers fail to verify the identity of online information purveyors.
In what may be the first legally contested case of cyber-quackery, the state of Massachusetts brought civil action against a woman who cited supposed research to sell a questionable cure for AIDS over the Internet. While it is not clear if anyone was injured, the Massachusetts district attorney obtained a restraining order to shut the operation down. (For more information on the case, refer to Massachusetts v. Marjorie Phillips on the Web at http://vmag.law.vill.edu/naag/COMPLAIN.HTM.)
Checking the credentials of information providers is an especially good idea in the dicey area of online medical advice. Most online medical consulting takes place informally in support groups on topics such as cancer, diabetes, chronic illness and natural medicine. CompuServe forums, America Online chat rooms, Usenet newsgroups and e-mail lists are fertile ground for the spread of misinformation. Lacking medical experts, these discussion groups allow anecdotal testimony to prevail over evidence-based science.
Even when physicians belong to these groups, they are often loath to identify themselves, fearing a deluge of inquiries-and legal quandaries. Usually, the dialogue is dominated by a handful of well-intentioned but misinformed people.
In one instance that received attention in the media, a patient started taking a drug to treat epilepsy he was convinced would help his ALS. (His physician allowed him to try the drug, knowing it wouldn't harm him.) The patient, encouraged by what turned out to be placebo effects, persuaded other members of an online ALS group to ask their physicians for a prescription for the drug. While the physician was quoted as saying that no harm was done to individuals who took his patient's advice, the incident illustrates how incorrect-and dangerous-information can circulate online.
Even the most legitimate-seeming sites may provide erroneous information. On eLine, Reuters Health Services' online consumer program, John Renner, MD, wrote how he found a popular site called Health World that was promoting what amounted to "health misinformation, propaganda, and semi-science." The site touted the health benefits of chlorophyll that Dr. Renner explained are biologically "impossible." Visitors to the site, however, might not know any better; its advisory board includes health care professionals.
It's an example of why physicians associated with Web sites should regularly check the medical information on these services for accuracy and legitimacy—and why physicians and patients alike should approach online health information with caution.
Sample sites
ACP Online -http://www/acponline.org
aidsnyc.org -http://www.aidsnyc.org
Ask Dr. Weil -http://www.drweil.com
Go Ask Alice -http://www.columbia.edu/cu/healthwise/alice.html
Health World -http://www.healthy.com
Reuters Health -http://www.reutershealth.com
Teaching Critical Evaluation Skills for World Wide Web Resources -http://www.science.widener.edu/~withers/webeval.htm
'If it sounds amazing, it probably is'
You don't have to venture online to check for cyber-quackery and dispel rumors about health information. Try encouraging patients to share printouts of online medical advice with you, and advise patients to follow these six rules of thumb when looking for online health information:
Consider the source. People tracking information should make sure that "sources are cited and that they are reputable and dependable," said Joel Beard, manager of a Web site called aidsnyc.org for the AIDS Treatment Data Network.
Check the date. Recommend that patients check the dates of any data they find. Mr. Beard said that AIDS information more than six months old, for example, may not be current.
Don't rely on search engines. Instead of using generic Internet search engines like AltaVista, find a reliable source of medical information. Examples include Reuters Health's eLine and ACP Online's Web Watch, whose reviews are prepared by physicians. In the future, Harvard's Dr. Slack predicts, an organization will officially approve health related sites.
Contact the site. Most medical sites generally provide contact information. If the validity of the information on the site is in doubt, Mr. Beard said, request documentation of clinical information from the webmaster. If the site refuses to comply, consider yourself warned.
Be critical. As Andrew Weil, MD, notes in his advice column on HotWired, "if it sounds amazing, it probably is."
Get educated. Conferences like the one held last spring at the Harvard Center for Clinical Computing ("The Computer as a Patient's Assistant") show attendees how to become more discriminating and informed medical consumers. Similar resources, such as Dr. Slack's forthcoming book, "Cybermedicine," and Widener University's online guide to "Teaching Critical Evaluation Skills for World Wide Web Resources," offer help.
Holly Epstein Ojalvo is a New York City-based freelance writer specializing in health care.
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