The Web Docs

By Christine Gorman

Like most Americans, Peggy Garves, 49, of Albuquerque, N.M., has trouble getting more than a few minutes of her doctor's attention. So, when her 76-year-old mother suffered a stroke last year, Garves consulted the Internet, surfing medical sites for information about treatment and rehabilitation.

Then, when Garves' husband developed mononucleosis, she was back on the Web. "Doctors have to see 100 patients a day and are too busy to talk to me," she says. "The Internet helps fill in the blanks."

Right, but you have to be careful what you download. Any fool--or charlatan--with a telephone, modem and computer can create a decent-looking website. Result: an epidemic of Internet snake oil, featuring discredited cancer "cures" like laetrile staging a comeback, $200 "second opinions" with more disclaimers than a sky-diving class, and incompetent "diagnoses" from self-styled "professors" and "academicians" at $50 or so a pop. What's next? An e-auction site for an appendectomy or laser eye surgery?

Just last week the Food and Drug Administration asked Congress for greater authority to regulate online pharmacies and punish sites that peddle medications without a prescription. State officials are also seeking help in shutting down rogue drug sites.

But don't expect the Wild West atmosphere to vanish anytime soon. In just a few hours of trolling the Web, staff members at the Federal Trade Commission found 1,200 sites that touted questionable cures for such serious ailments as heart disease and AIDS. The government agency notified all of them that they were violating truth-in-advertising laws, but fewer than 30% removed the offending claims. Stronger measures are in the works.

So what's an e-patient to do? For starters, don't turn to the Internet in an emergency. If you're experiencing chest pains or a sudden weakness on one side of your body, call an ambulance, not a health portal. Just as important, don't trust anyone who's willing to give you a Web diagnosis without first examining you. That's not only unethical but also usually illegal.

No site is perfect, but the best ones share some important qualities. They're up-front about who they are and what their mission or business plan is. Advertising, if any, and online shopping zones are clearly separated from editorial content. Both the original source of the information and the date it was posted or reviewed are marked. Online experts are identified by name, credentials and institution, and confidentiality is treated as more than a technicality. (You would be surprised how often data on your surfing habits are collected without your knowing it.)

Some of the most reliable sites are sponsored by federal health agencies. The first stop for would-be cyberpatients should be the Web pages of the National Institutes of Health. Be sure to bookmark its consumer-information page www.nih.gov/health) because you will come back to it time and again.

The essence of any good search is picking the right key words. Technical terms like "aortic stenosis" are best for professional sites like NIH's; "leaky valve" would probably be the choice for more consumer-oriented Web pages. If you want to plumb deep, the NIH's search engine search.nih.gov will direct you to the latest consensus reports by panels of experts, clinical alerts and research studies. But be prepared to use your browser's BACK button. The search engine can often leads you to a potential dead end.

After you've pumped the NIH site for all it's worth, aim your browser at healthfinder.gov It's a gateway to other reliable health sites, both in and out of government. A nifty feature: its search engine provides specific answers to your questions as well as links to the Web pages of pertinent organizations, say, the American Heart Association americanheart.org and the American Cancer Society cancer.org)

University medical centers are good bets for in-depth information. Stanford, for example, has great sites on stroke stanford.edu/group/neurology/stroke and tuberculosis molepi.stanford.edu) and the University of Pennsylvania is known for its cancer site oncolink.com) If you're a member of Kaiser Permanente, the largest nonprofit HMO in the U.S., you can log on to its ultrasecure password-protected kponline.org and consult the nurses and pharmacists online. If necessary, they can access your medical records for more information. And if you talk about troubling symptoms in the site's discussion groups, the moderator can follow up with your doctor to make sure you've received the care you need.

By far the most ambitious sites are the ones fueled by dotcom fever. Click on medscape.com or webmd.com and you will get a variety of information, a wide range of services and, of course, lots of banner ads. The best for-profits offer the personal touch missing from many doctor's offices. The worst just repackage snippets from television or wire reports. One clever gimmick by the exploitative sites is to provide access to Medline, a gigantic database of research literature. Nowhere do they mention that you can get Medline directly--without providing your e-mail address or other personal info--at the National Library of Medicine www.nlm.nih.gov)

Don't expect instant gratification. The medical staff at the Mayo Clinic's Health Oasis mayohealth.org receives 7,000 questions a month but answers only one a day. "We don't try to practice medicine on the Web," says Dr. Brooks Edwards, Health Oasis' medical director. "But we answer questions a lot of people are interested in."

Try to track down original sources. An inquiry about St. John's wort on intelihealth.com (a joint venture of Aetna U.S. Healthcare and the Johns Hopkins University Health System) last week shows why.

The search produced a fact sheet correctly identified as coming from the National Institute of Mental Health. There was even a helpful notice that it was last updated June 10, 1998. But because InteliHealth had merely copied the original posting from NIMH instead of linking to it directly--a common practice that keeps you from straying to other websites--a vital piece was missing. The NIMH had updated its posting on March 10, 2000, to alert consumers that the herbal remedy interferes with the action of the AIDS drug indinavir and the immunosuppresant cyclosporine.

There is no doubt that you can find life-saving information on the Internet--and that we're all going to manage our health on the Web someday. Whether you can truly depend on that information or are just playing an elaborate, perhaps risky game of cyberdoctor will depend a lot on the electronic company you keep.

--Reported by Nancy Harbert/Albuquerque, Marc Hequet/St. Paul and Alice Park/New York

With reporting by Nancy Harbert/Albuquerque, Marc Hequet/St. Paul and Alice Park/New York