On the Web, It's Hard to Know What Health Information Is Reliable

In the middle of the night, the man pulled himself out of bed, unable to

Expedition Post reporter John Schwartz takes you on a guided tour of health sites that you can trust.

sleep because of lingering discomfort from his recent vasectomy. According to the handouts from his doctor, the pain should have been diminishing substantially by then. Was something wrong, or was he just being a big baby?

Up too late to call the doctor or to go to the library, he sat down instead at his computer and searched the Internet. After about a half-hour of reading online materials and discussions about vasectomy, he found the crucial bit of information: He needed to switch, at least temporarily, from his usual boxers to more supportive briefs.

This suburban Washington Internet surfer is me. But I am not the only one to turn to the 'Net for medical information: According to a recent study of Internet usage, more than 37 percent of America's wired households regularly seek out medical information online. And they have a wealth of information to choose from: An estimated 10,000 sites on the burgeoning World Wide Web contain consumer health information, according to the study, "Consumer Health and Medical Information on the Internet," published by the research group FIND/SVP.

But can the information on the Net be trusted? An editorial in last week's edition of the Journal of the American Medical Association warned, "let the reader and viewer beware" of online "snake oil." Although experts differ as to the amount of flawed information that can be found online, boosters of online medical information say savvy consumers can learn to separate the wheat from the chaff.

Meanwhile, medical sources on the Web continue to grow. Last Tuesday the federal government brought a big new entry to this crowded field. Healthfinder (www.healthfinder.gov) is a new site on the World Wide Web that serves as an entry point for a vast collection of hundreds of other health information sites maintained by federal, state and local governments, as well as universities and not-for-profit groups.

Public health officials say the new system could be an easy-to-use entry point to trusted consumer health information—just as the Clinton administration has turned its "Welcome to the White House" Web site (www.whitehouse.gov) into a starting point for finding all kinds of official government information, from tax forms to Supreme Court decisions.

"With Healthfinder, we're helping people get reliable health information, faster and easier, over the Internet," said Donna E. Shalala, secretary of the Department of Health and Human Services, in announcing the new service.

Weeding Out Biased Information
While launching Healthfinder during a conference on health information on the Web, Shalala and Vice President Gore stressed that much of what you find on the Internet—like much of what you read in the newspapers or hear on the street—might not necessarily be true. Speaking via video, Gore called the wealth of online consumer health information "a mixed blessing," because "finding high-quality information that is accurate, timely, relevant and unbiased is a daunting challenge to even the most experienced Web surfer."

In materials accompanying the announcement, much was made of a chilling statistic drawn from the FIND/SVP study: that out of 160 randomly selected health information Web sites, more than half may contain inaccurate or biased information.

That might overstate the chance of finding bad health information, however. The study the government officials relied on to justify the sweeping statements about inaccuracy was not itself published in a peer-reviewed journal, a standard often cited by scientists to show credibility. And the study does not go quite so far as the government's point about the perils of searching for consumer health information online: It did not evaluate the accuracy of the material in Web sites but instead looked at who maintained the site and whether the owner had a financial stake in products discussed.

Michael S. Brown, author of the study, warned against reading too much into the single statistic.

"We just never did a content evaluation," Brown said. "I'm not a clinical expert." Instead, Brown said, he noted whether it was a commercial site. Thus, Brown said, a site sponsored by a vitamin company might not be unbiased in reviewing research on the value of dietary supplements.

The potential for bias is not the same as actually finding flawed information, of course, and Brown said that many of the for-profit sites do a good job. "There are a lot of excellent resources out there from the private side," Brown said. He called the government's new entry "a highly valuable tool" for consumers "to get them to the good stuff."

Nonetheless, concerns over the quality of health care information online have been building, as evidenced by the editorial in the Journal of the American Medical Association. "At first glance, science and snake oil may not always look all that different on the Net," wrote William M. Silberg, George D. Lundberg and Robert A. Mussacchio of the American Medical Association. "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 to make a fast buck." The authors recommended that "basic quality standards" be developed so that those turning to the Net for medical information be able to distinguish the gold from the dross.

Relying on some of the same qualities that lend credibility to printed medical information, the authors recommended that contributors to Web sites be identified and their credentials be given, along with references and sources for information. They also recommended that commercial ownership be fully disclosed. While not calling for any attempt to censor sites that do not comply with such standards, the authors suggested that any site not complying should be seen by consumers as suspect.

Although the amount of erroneous, biased or hucksterish material online is unclear, it can certainly be found, said John Renner, a professor at the University of Kansas School of Medicine who founded the Consumer Health Information Research Institute. Renner investigates medical quacks and said, "It took 'em a nanosecond to find the Internet."

"I think the Internet's probably going to be the best tool for patient health, education and empowerment," Renner said, but "there's a lot of marketeers out there who have learned how to confuse." Renner recommends that consumers be on the lookout for warning signs of quackery, such as "using testimonials" and "making claims for many illnesses that cannot be justified scientifically." Renner also produces a regular column about online health resources that can be found at the Reuters wire service site (www. reutershealth.com/ihw/).

While acknowledging that there are quacks hoping to profit from an online connection, Tom Ferguson of Boston's Center for Clinical Computing said that the problem is sometimes overstated by those who find the Internet threatening. He compared it in general terms with the vast array of health information available in the print media, ranging from highly scientific journals to lurid tabloid newspapers. "Don't look at the checkout counter of your supermarket for bad information," he joked, "but if it's on the Internet, it must be evil!"

Reaching Other Patients
Ferguson said that sites like Healthfinder can be valuable to consumers, but that they constitute only part of the way that the online world provides important health information. Using the Internet as a huge global library is appropriate for new searchers, he said. But increasingly people are using the Internet for reaching other people, not just information.

"If you have a chronic health concern of almost any kind," Ferguson said, "it's a pretty good bet that there is a community out there of experienced self-helpers who would be happy to have you join them."

Medical professionals often do participate in many of these forums, "with the professionals learning as much as or more than the patients," said Ferguson, whose medical self-help Web site can be found at www.healthy. net/selfcare.

In the better online medical discussions, good information tends to drive out bad, said Flash Gordon, a California-based doctor who moderates discussions on the Whole Earth 'Lectronic Link (Well) and for a new online medical consulting program sponsored by Blue Cross/Blue Shield of Minnesota and put together by the California-based Direct Medical K. His online discussions have "built-in checks and balances," Gordon said. "If somebody says something that seems really weird and far out, I might say something, or one of the other MDs might say something."

The tone, Gordon said, is civil. "It's not slagging [insulting] each other. . . . If someone says something that's wrong or has potential for causing harm, chances are somebody else is going to hop in and say, 'Hey, that doesn't sound right. . . . Do you have a reference for that? I'll look it up.' Sometimes I'm wrong," Gordon admits. He says the give and take of online discussion changes the doctor-patient relationship for the better, getting away from what he calls "the old attitude. I am the MD—Minor Deity—and you must hearken unto my words."

Not all discussions are so genteel, however. Internet connections can, at times, generate more heat than light—especially when it comes to diseases that are already the focus of medical controversy. Consider Lyme disease, the tick-borne ailment that affects tens of thousands of Americans every year.

A huge debate in the Lyme community rages off- and on-line about whether there is such a thing as "chronic Lyme disease" or "post-Lyme syndrome," which leaves patients feeling run down and ill even after they've been given the standard oral antibiotic treatment. While most scientists think this variant of Lyme is rare or nonexistent, a vocal group of patients and doctors disagree and spend inordinate amounts of time posting messages on Lyme disease chat groups attacking those scientists and doctors who downplay the syndrome and accusing them of conspiring to cover up a national epidemic. They accuse the naysayers of being beholden to health insurance companies who don't want to pay for long-term drug therapy.

Their opponents reply that "chronic Lyme" is an invention of unscrupulous doctors and intravenous drug infusion companies who want to make a fortune prescribing and selling the drugs.

Members of opposing Lyme disease patient groups often post libelous and often anonymous messages about each other. Many of these messages are long on venom and short on science, leaving unsuspecting patients to sift through the ashes looking for a cinder of truth.

That's why Ferguson suggests that newcomers to these groups tour the different forums on various online services to find the one that sheds the most light with the least possible heat. It won't take long before the newcomers find they have a contribution to make as well. "In these communities, self-helpers are not only the recipients but also the providers of self-help support. People come for help, and stay on to help," Ferguson said.

That's how it happened for Carrie Lay. The San Rafael, Calif., resident gave birth to a son in 1985 who was later diagnosed with Asperger's disorder, a form of autism that made her son prone to violent outbursts and erratic behavior. Once doctors had diagnosed her son, she began to share her experiences with members of the parenting conference on the Well. As she learned more and more about the condition, she made contact with other parents and gave them moral support and shared coping strategies.

She also wrote about her ordeal—her son's tantrums, his attempt to kill her younger daughter, the emotional distance of an Asperger's child.

"I spent a couple of years posting about David in that topic, my daily struggles with him," she said. As she wrote her compelling story for the online audience, she said, she gained confidence in her abilities as a parent and learned to accept her difficult child.

Although she learned a great deal about the condition over time, Lay believes the greater value of her online experience has been the support she received in a difficult time. "Everyone who has contact with the child and cares about the child is impacted by his disability. . . . It wreaks havoc on your whole family system," she said.

Lay and the boy's father are no longer together, but he monitors online discussions of autism and Asperger's and sends Lay regular bulletins and tidbits.

She hasn't posted any updates in a while now. Her son's behavior has improved with her hard work and the passage of time; he has just one or two outbursts a day.

"I don't feel the need any more" to write the postings, she said. "I feel so much stronger—about myself, and David. They cured me."

Take a guided Web Expedition to health sites that you can trust.

Staff writer Rick Weiss contributed to this article.