Coping with cyberchondria
By Russell Shaw
Gannett News Service
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Always health-conscious, she logged onto the Web, visited some health-related sites and researched her symptoms. But as it turned out, that very process created as much fear in the Net-savvy, 44-year-old Colorado resident as her symptoms did.
At first, she spent several hours using a search engine to look for Web pages that contained both the terms, "anemia" and "benign conditions."
"That helped weed out some of the scary stuff, but I just couldn't 'unsee' the scary terms I had seen," she said.
For many years, Manning had used health reference books to check symptoms, but to her, the Internet is "much worse."
"All you have to do is key in your pet fear or symptom, and up pop little abstracts with scary information in them," she said. "Even if you are trying to find comforting statistics, you have to wade through all this 'bad.' Of course we pick up on the bad, only."
After several hours of picking up "on the bad," she had enough. Manning asked a friend to visit some health information sites and do the point-and-clicking for her.
Manning is not alone. Every day, millions of Americans use the Internet to research symptoms and treatments. Like Manning, some do this frequently, surfing the Net on the wave of their fears. In March 2002, online behavior research firm Harris Interactive termed health information sifters such as Manning "cyberchondriacs." In a May 2002 research report, the Pew Internet & American Life Project (www.pewinternet.org) called them "health seekers."
"About 6 million Americans go online for medical advice on a typical day," said Pew in its "Vital Decisions" report. "That means more people go online for medical advice on any given day than actually visit health professionals (on a given day)," Pew said, comparing the 6 million estimate to an unspecified but lower number provided by the American Medical Association.
It is not a small leap from chewing your nails during a nervous four-hour "cyberchondriac" online session and the potential harmful effects of acting on faulty recommendations gleaned from such sessions. Research and the opinion of experts seem to disagree on what the "scary" aspects available online about health entail.
Potential 'minefield'
Reassuringly, Pew reported that only 2 percent of health seekers "know someone who has been seriously harmed by following medical advice or health information they found on the Internet." Still, Pew said, "while this small number may cheer advocates of online health information, it serves as a warning for e-patients who may rely too heavily on the advice they find on the Web."
"The Web can be a minefield for bad information," said Howard Wolinsky, author of "Healthcare Online for Dummies." "Serious illness can make people desperate for help, leaving them vulnerable to dangerous and fraudulent information that seems to be available in abundance at Web sites and in e-mail messages making the rounds."
Whether helpful or not, some of the information cyberchondriacs obtain during online searches winds up as printed-out Web pages handed to healthcare providers at the onset of an examination or consultation. So, where do physicians draw the line between a well-informed patient and an overanxious, leap-to-conclusions, "health seeker"?
"If patients use the information to ask questions, and (are) reasonable, that is fine," said Dr. J. Donald Capra, an immunologist and president of the Oklahoma Medical Research Foundation in Oklahoma City. "Some patients will take the information and then if the doctor does not spend an hour with them, will think they were shortchanged." Capra first wrote about cyberchondria for an Oklahoma newspaper in 1999, long before the term was in common use.
With understandable desperation, some online health seekers also may read about early-stage medical research, and they demand treatment based on unproven remedies tested only on laboratory animals or a small group of human subjects.
In fact, the Pew study noted that in the past year, 48 percent of health seekers — about 35 million people — have looked online "for information about alternative or experimental treatments or medicines."
"The press loves to jump on a new discovery and run for the hills on it," Capra said.
"Very basic laboratory research, such as done with animals, is very important for the development of science but has a long way to go to clinical applicability," said Dr. Richard Glass, deputy editor of the Journal of the American Medical Association and editor of its weekly Patient Page feature.
Also a psychiatrist in private practice in Chicago, Glass has a foot in both the information disseminator and clinician camps.
"Sometimes, patients come in with a large volume of printed material and expect you to read it right then," Glass said. He advises patients to exercise restraint on the size of these printouts, and restrict themselves to "just a few questions." He prefers that patients develop these questions from information gathered by surfing sites put up by government health agencies or "reliable medical organizations."
Using such sites, he said, will help reassure patients that the information they read on them are factual and reliable. He is quick to add, though, that some other medical sites come up a bit short. "Many other (health-related) sources on the Internet (that) are commercially or privately sponsored are not reliable. They are put up for commercial benefit, or by people with an ax to grind."
Finding reliable health sites
There is, in fact, an organization that examines health sites for best practices. URAC, formerly the Utilization Review Accreditation Commission, does not certify the accuracy of information on these sites. Instead, the Washington, D.C.-based nonprofit body accredits healthcare sites that meet several criteria. Qualifying sites follow policies that preclude a potential sponsorship-spawned conflict of interest, encourage the security of personal information that you might submit while on the site and structure sites so users — cyberchondriacs and otherwise — have easy access to the information they want.
Guy D'Andrea, senior vice president of URAC (www.urac.org), said that a medical site's credibility stems largely from "what the perspective of the site is, who is behind it, what is their motive, and who creates the (site's) content."
The consensus seems to be that with the right balance of judgment and self-control, searching for health information online can be helpful. The Pew survey found 51 percent of respondents who have been treated for a serious illness in the past year said either they or someone they knew was "significantly helped by following advice they found on the Internet."
Yet, for those of a certain mindset, giving in to the temptation to spend hours looking at health sites may do more to harm the nerves than heal the body.
"I have stopped looking (health information) up on the Internet," Manning said. "It is booze for the drunk, and just about as tempting."
