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The Web: Patients heal themselves online

Posted - Aug. 4, 2004 at 9:40 a.m.



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Aug 04, 2004 (United Press International via COMTEX) -- A weekly series by UPI examining the global telecommunications phenomenon known as the World Wide Web.

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CHICAGO, Aug. 4 (UPI) -- Dr. Jacob Teitelbaum, an internist, learns a great deal from his clients these days, many of whom are sophisticated Internet surfers.

"My patients teach me a lot," said Teitelbaum, who practices in Annapolis, Md., and is the author of the best-selling book, "From Fatigued to Fantastic!" (Avery Penguin Putnam).

"Medical school was a good start," Teitelbaum told United Press International. "But the Internet is a powerful information tool. It saves a lot of time and has a lot of valuable information on medical conditions. Having access to that makes it easier for doctors to listen to the patient, and treat the patient like a person, not just a disease."

From Annapolis to Anaheim, more patients are taking control of their healthcare situations via the Internet. They are searching out information on cancer, heart disease, and other afflictions, and many times, when motivated by their own illness, are finding cutting-edge medical research online their personal physician has not yet received.

"That's a good thing," Dr. Jay Brooks, chairman of the hematology and oncology department at Ochsner Clinic Foundation in Baton Rouge, La., told UPI. "I encourage patients to do that. In fact, I give a list of 25 helpful medical Web sites that we also recommend that every new patient looks at."

Research by the Boston Consulting Group shows patients who use the Internet frequently are up to three times more likely to take an action that affects their diagnosis -- and treatment.

The primary problem for patients, however, is that finding good, solid medical and health information is sometimes tricky online. "There's a lot of misinformation out there," Dr. Jack Cassell, an urologist, who practices in Mount Dora, Fla., near Orlando, told UPI.

A recent survey by Harris Interactive found 65 percent of patients generally start their searches for medical information through search engines, such as Google, Yahoo, Ask Jeeves and others. A small percentage seeks out commercial medical sites as their first stop online.

These types of searches often lead consumers to information that is generated by pharmaceutical and drug makers, who have a vested interest in selling their remedies.

Increasingly, however, consumers are turning to non-commercial sources of information online, offered by the government, universities or health organizations, to find medical information.

More than 1 million visitors per day are logging on to the Web pages run by the National Library of Medicine, Dr. Donald Lindberg, the library's director, told UPI. "It's close to a billion a year," he added. "A good, heavy part of that are consumers."

The NLM -- part of the National Institutes of Health in Bethesda, Md. -- is the world's largest medical library. It recently launched a new program, called InfoRX, to make its medical databases more easily accessible for consumers, and lead them to reliable health information, not information that may be shaded by a drug company's perspective.

"InfoRX rests on a considerable amount of previous work," Lindberg said.

For years, the NLM has operated a service called Medline, which provides doctors with access to summaries of the latest medical research. The library also offers MedlinePlus for consumers.

Along with other colleagues in the U.S. Senate, Majority Leader Bill Frist, R-Tenn., himself a medical doctor, starting pushing in the late 1990s for medical information to be made available online for free.

"That was a major change for us," Lindberg said.

When the federal government began putting this information online, the perceived wisdom in the medical community was patients probably could not understand it. The reason was doctors themselves often have difficulty understanding medical research that is outside of their specialty area, Lindberg explained.

"We have found that if you have an illness, you read information about it very closely," he said. "You read it more closely than you would read a paper on the subway."

NLM has revamped MedlinePlus recently. Now, it is more advanced and is organized into 700 health topics. The research comes primarily from non-profit organizations.

"Some of the data files we create, others are created by the Department of Health and Human services, or the (Centers for Disease Control and Prevention) and voluntary health associations, like the Cancer Society," Lindberg said. "We exclude all sites that seek identifying information on the patient -- or that are trying to sell something. It seems to us that if you are going to provide medical information to the public, you shouldn't ask for their Amex card number right away."

Other, non-profit medical sites, such as nurseprescriber.co.uk, run by the Cambridge University Press, and netwellness.org, operated by the University of Cincinnati and its partners, also are increasingly popular. Netwellness.org generates 2 million hits or more per month.

"I believe having information available is changing medical practice and that it can change it still more," Dr. Susan Wentz, director of the Case Western Reserve University's office of health and urban area health education Web site, told UPI.

Some experts, however, dispute the notion that just because the information is provided by a drug company, it somehow is tainted.

"This is a very, heavily regulated industry that we're talking about here," said Ian Cross, chief executive officer of I-Site.com in Philadelphia, which develops sites for medical clients. "Consumers should feel confident when they are getting information from a regulated company," he told UPI.

I-Site works with clients such as Aventis, Novartis and Johnson & Johnson -- all of which are subject to penalties from the federal government if they provide misleading information about their medical products to consumers.

"Pharmaceutical company sites are not necessarily the first place people come to look for information, but a lot of the large pharmaceutical companies have realized that there is a value to providing good, authoritative information to consumers," Cross told UPI.

Even healthcare providers, including insurance companies and HMOs, are generating content for patients, through portals such as myuhc.com, experts said.

Still, some are skeptical about the information explosion in the medical world, and are wondering whether the trend is creating risks for some patients.

"Patients are much better informed healthcare consumers since the advent of these sites, but 'caveat emptor' rules the day," said Dr. Gail Gazelle, assistant clinical professor of medicine at the Harvard Medical School in Boston, and president of Pal-Care Inc., a practice that provides e-mail guidance to patients and families.

"The risk for emotional harm and misinformation is high," Gazelle told UPI.

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Gene Koprowski covers telecommunications for UPI Science News. E-mail sciencemail@upi.com

Copyright 2004 by United Press International.

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