Health

Users beware

‘Quack’ sites lurk among many good Internet health links

Susan McClelland June 21 1999
Health

Users beware

‘Quack’ sites lurk among many good Internet health links

Susan McClelland June 21 1999

Users beware

Health

‘Quack’ sites lurk among many good Internet health links

Susan McClelland

In 1997, when Zachary Smith was diagnosed at the age of 11 with systemic onset JRA, a severe and debilitating form of juvenile arthritis, he felt he was the “only child in the world who was not normal.” Having just moved to Bellaire, Ohio, a small town with a population of about 6,000, Zachary had no friends and knew no one who suffered from the disease. Physically unwell, he weighed only 59 lb. and at times could not walk. Turning to the Internet for help, he came across the Web site for the Arthritis Society of Canada. There, he found a treasure trove of information: cartoon figures showing exercises that would help him stay active; speeches by top researchers; definitions of symptoms; tips for living well. Working with his doctors, Zachary began to understand and take control of his arthritis. He also found the Open Forum, a page that allows arthritis sufferers to post messages to each other. When Zachary, then facing surgery, wrote that he was frightened, Canadian sufferers from coast to coast offered reassurance. “I learned that it was not just me,” says Zachary. “I found more support from this one Web site than anywhere else.”

Millions of people around the world

Information at the fingertip

Among the best Canadian health sites on the Internet, some providing links to many other reliable sources:

• www.hlth.gov.bc.ca/exsites/index.html—B.C. ministry of health

• www.achoo.com—MNI Systems Corp., a health information technology company

• www.mtrl.toronto.on.ca/centres/chis/index.html

—Consumer Health Information Service, Toronto Reference Library

• www.arthritis.ca/new.html—Arthritis Society of Canada

• www.alzheimer.ca—Alzheimer Society of Canada

are seeking health and disease information on the Internet. For people like Zachary and his friends in Canada, the Net is creating communities of illness sufferers and wellness seekers no longer isolated by borders or distance. Many certified health facilities are posting in-

formation formerly available only to readers of medical journals and residents of large cities with research libraries. Yet health professionals caution that even reliable information should be used only under a doctor’s supervision. Even more disturbing, they note the vast number of sites posted by non-professionals, including some offering unproven “cures,” home remedies and sometimes even false information. “Health information on the Internet is lowering the barriers between people who need to know and very techni-

cal kinds of information,” acknowledges Tom Flemming, head of public services at McMaster s Health Sciences Library. “But I don’t want to leave the impression that everything is delightful. We have to remember that we are talking about information, not advice.”

In mere seconds, a user keying in “breast cancer” on a popular search engine like AltaVista can bring forth connections to 134,245 related Web sites generated from nearly every country in the world. Tens of thousands of healthrelated Web sites originate from recognized institutions in North America

alone. And that does not include sites posted by commercial businesses, individuals or “quacks” who have no medical affiliations.

The technology has allowed disease associations, hospitals and research facilities to disseminate their information to a much larger arena, and to the audiences who need it the most. The Arthritis Society’s 17,000-page site gets an average of36,000 hits each day. Audio and video attachments show the latest research findings, and a store displays over 250 arthritis-related items for sale, including cutlery and bathroom aids. “Our prime concern,” said Robert Watts, the society’s Web master, “was getting the information out, not fund-raising.”

Still, some searchers may have trouble

finding the reliable information they need. A study published last June in the journal of American Academy of Pediatrics raised concerns about the quality of advice. Of 60 articles on the treatment of diarrhea in children published by traditional medical sources, it found that only 12 fully conformed to the academy’s guidelines. Even major medical institutions, schools and hospitals “need to devise ways to carefully monitor and establish quality control of what is being distributed from their home pages,” it concluded.

Even worse, since health information on the Internet is not subject to legislation governing standards, any individual or company can post supposed cures or advice with little regard for the truth. If patients turn to bad advice in desperation, the results could be devastating. “When someone has been given a diagnosis of cancer or some other illness, they are in a vulnerable state,” notes Dr. Barbara Whylie, director of medical affairs and cancer control for the Canadian Cancer Society. “They have to be cautious because a lot of the information on the Internet has not been subject to critical review.”

Efforts are under way to identify Web sites that post credible information. One leader is the Health on the Net Foundation Code of Conduct, an international nonprofit organization established in 1995. The organization developed the HONcode, eight standards Internet users should apply to any site posting medical information. Prime among them: information must be provided by qualified professionals, and it has to be designed to support, not replace, the relationship between doctor and patient. “You should approach finding medical information on the Internet the same way you would approach buying a nonfiction book,” says McMaster’s Flemming, who conducts seminars and workshops on Internet health issues. “Do the authors come from reputable institutions? Do they have the proper credentials? Was it published recently?”

One Web site recognized by HON is operated by the Alzheimer Society of Canada. Launched in 1997, it offers not only current research on the disease but also a forum where caregivers can share their stories. Vancouver legal secretary Virginia Freinthal turned to the site four years ago after her then-79-year-old father started to show symptoms. “I

knew nothing of the disease,” she says. “The Web site really provided my mother and me with the information to cope.” Doctors had brushed off her father’s problems as age-related dementia. But Freinthal learned to recognize symptoms direcdy related to Alzheimer’s, and went back for help. Now, her father is part of a clinical study at the University of British Columbia.

Responding to the growing demand for accurate information on the Inter-

net, Health Canada will launch a Web site in September to provide general information on an array of topics including mental health, sexuality and disease prevention. It will also supply links to the home pages of recognized Canadian health institutions and disease associations. There is plenty of good health information out there. Now, the critical task of guiding browsers away from the dangerous and towards the reliable is gaining speed. EH]