It is a tangled medical web they weave on Internet
By: Judy Foreman
10/13/1997

A few weeks ago, a 35-year-old Connecticut man was stunned by his diagnosis - scleroderma - and even more surprised by his doctor's advice: Whatever you do, don't check the Internet.

"It's not just that there's misinformation out there," Dr. Ann Semolic an internist in Willimantic, says she told the frightened young man. "It's that there are 100 different ways any disease can play out, but you will just have one. Let's not worry about the other 99."

People think that if information "comes over a $ 2,000 machine, it's got to be reliable," she says. "But that's not necessarily true."

Some patients are helped enormously by information they find on the Net, she adds, citing a woman with panic disorder who returned reassured after cruising the Net. But others wind up scared, confused and misled.

"You have to learn to be a good judge of information," agrees Dr. Bruce Karlin, a primary care physician in Worcester whose concern led him to attend a recent conference on Internet health information at MIT.

"I want patients to bring me the information" they find on the Net, he says. "I'll be glad to referee."

The exploding world of medicine online is a vast "place," with an estimated 10,000 to 25,000 web sites devoted to health matters, and more coming along all the time.

About 40 percent of people who cruise the Net "do so for health information at one point or another," says Dr. Helga E. Rippen, a physician-engineer who runs a health information think tank in McLean, Va.

Yet the quality of the information ranges from the impeccable to the intolerable, says a growing group of Net watchers like Rippen who are working to give consumers better tools to assess medical advice online.

On Friday, for instance, Rippen's think tank, the Health Information Technology Institute, will host a "summit" at which several dozen specialists will hammer out guidelines to help distinguish solid advice from schlock.

Last month, a World Health Organization group met in Geneva to study the problem of illegal, cross-border prescription drug sales on the Net and general problems of information about medical products touted online. One group trying to coordinate all these efforts is Internet Healthcare Coalition, which incorporated in August.

And there's the Health on the Net Foundation in Geneva (www.hon.ch), which has developed a self-policing system complete with a seal of approval, called HON, for web sites to display as evidence their information is solid. But the system is purely voluntary.

The very appeal of the Net, of course, is that it is utterly democratic - anyone from the most elite researcher to the greediest shyster to the most desperate patient can say anything she wants.

There's no tedious peer review of data before it goes public, as there is in medical journals. No standards of accuracy and fairness. No way to ensure that all sides get equal time. All that's fine, even with many of those concerned with bad information.

In other words, you're on your own in the medical maze.

Well, not totally. The folks now slaving to create consumer guidelines have some good ideas to help you evaluate health information online. So caveat surfer, and here goes:

Authorship, or who wrote this stuff?

"If the author or person publishing this information doesn't give you basic identifiers and credentials, you should be suspicious," says Bill Silberg, editorial director for medical news and new media at the Journal of the American Medical Association. In April, JAMA published its own suggested guidelines for evaluating health information online.

You can also answer the "whodunit" question by clicking on "about us" on many web site home pages, says Deb Falk, vice president of Mediconsult.com, a group that combs medical journals and rewrites articles for a lay audience on the Net.

Attribution.

Web sites should clearly list sources for information. If it comes from an authoritative publication such as the New England Journal of Medicine (www.nejm.org) or JAMA (www.ama-assn.org/jama), for instance, you can trust the data has been vetted by experts. They're not always right, of course, and new research comes along regularly to shake up the prevailing wisdom, but they're not likely to be off-the-wall. The same goes for many other journals, such as those in big data bases like Medline.

Information from major medical centers and government agencies such as the National Institutes of Health is considered reliable. Pharmaceutical companies offer valuable information, but remember that they're selling products.

You can get some clues from the language of the Net itself. Sites with a ".com" after their name are commercial. Those with ".edu" are educational, those marked ".org" are nonprofits, those with ".gov" are governmental and those with ".mil" are military. Knowing that begins to give you some idea what their agenda might be. Those marked ".net" are providers directly involved with Internet operations. Some sites are also marked with a country code.

But it gets tricky. You can start out on a reputable site, then click on a "link" to a site with much shakier information, so keep track of the web addresses.

Disclosure.

Ideally, people who put information on the Net tell you about any financial or ethical conflicts of interest. But they may not, and hidden agendas may be subtle. A group for patients with a disease may shape its message to exclude other viewpoints. It's also a red flag if somebody explains the basics, then suggests only one treatment.

Timeliness.

Check the date that the information was posted on the site and see if it has been updated. Newspapers, TV networks and medical journals constantly update information. Not all web sites do.

Anecdotal information.

The Net puts you in touch with two things, "data and people, and a lot of times, people can be more useful," says Dr. Tom Ferguson, author of "Health Online," a book about finding health information and support groups electronically.

People with a newly diagnosed problem often start out looking for disease information, but wind up using the Net to stay in touch with others in the same boat, Ferguson says.

This can be helpful and frightening. Through "chat rooms" and online discussion groups, you can find great information and support. You may also read stories that scare or depress you. The bottom line is that anecdotes, while emotionally powerful, tell you about only one person's experience.

Studies, the good, the bad and the confusing.

It takes a sophisticated eye to read a study carefully, especially to notice what information is not there.

At first glance, you may not see that the study involved only a handful of people. Or that that there was no control group, or that the study was not "double blind," meaning doctors and patients weren't told who was getting, say, a real drug and who, a placebo.

You may also not notice whether the study was done retrospectively, that is, by asking patients to recall events or by looking at records. In general, a study is more convincing if researchers follow patients and recorded what happens as treatment goes along.

And it can be easy, especially if a study tells you what you desperately want to hear, to be taken in by a site that touts one study but fails to note studies that reached different conclusions.

Target audience.

The Net serves everybody - researchers as well as people who know more about their cars than their bodies - so look for sites that neither talk down to you nor leave you in the technobabble dust.

Some sites do an excellent job at this, including the National Cancer Institute's site (wwwicic.nci.nih.gov/). Once at the site, you can choose information written for patients, health professionals or researchers. One strategy is to start at the patient level, then work your way up later on, if you still want to know more after you're more comfortable with your diagnosis and the information you've already digested.

Tattling.

The Net can be self-correcting. If you find something misleading, tell your friends, the webmaster who posted the bad information or a higher authority, if you can figure out who that is.

The US Food and Drug Administration, for instance, is charged with making sure pharmaceutical manufacturers make only approved claims for products on package labels and in advertisements. If you spot an improper claim, tell the FDA (www.fda.gov) about it.

The Internet Healthcare Coalition (www.ihc.net) is also working with drug makers, publishers and others to improve health information online, says John Mack, the IHC president.

Don't fly solo.

Just as you use the Net to amplify what your health care professional has told you, use that person to help evaluate what you learn on the Net.

If it sounds too good to be true, it probably is.

Examples abound here, but here's one. The California-based Wine Institute has barraged reporters and Net surfers of late with blurbs on the seemingly-endless virtues of the grape.

But when the Center for Science in the Public Interest, a watchdog group in Washington, took a close look at the site (www.wineinstitute.org), it found what it called "propaganda" that was "disguised as objective information based on recent research," including claims that booze may help with everything from a cold to pancreatic cancer.

All of which means you have to use common sense.  Or, as Ferguson, the "Health Online" author, puts it, "You can't check your brain at the door."

In a Sept. 29 column on hypochondria, the citation of a newly-released book was left out due to lack of space. That book is "Phantom Illness - Recognizing, Understanding and Overcoming Hypochondria," by Carla Cantor with Dr. Brian A. Fallon; published by Houghton Mifflin.

Judy Foreman’s column runs every other week. Past columns are available on www.myhealthsense.com.

Listen to her live call-in webcast radio show every Wednesday night from 8:30 to 9:30 EST on http://www.healthtalk.com.

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