In medical school, Daniel Hoch, M.D., Ph.D., was taught that the general public could not be trusted to understand complex medical matters. So when he became a neurologist, he tried not to burden his patients with too much information.
For example, people with seizures face a small risk of sudden unexpected death in epilepsy (SUDEP), a rare condition that has long puzzled neurologists (see “Sudden Unexplained Death in Epilepsy,” http://bit.ly/i9I8wt). Because the condition is so rare—and so frightening—Dr. Hoch seldom mentioned it to his patients.
But in 1994, his attitude changed. A colleague was experimenting with an online bulletin board where patients could exchange information. There, Dr. Hoch found messages from well-informed patients who eagerly shared stories and useful advice.
Dr. Hoch realized that this outpouring of sympathy and support—available all day, every day—exceeded anything doctors could provide. He even found people discussing SUDEP openly, with a sophisticated understanding of the medical literature on the subject.
“I began to share my knowledge on this topic with my patients,” Dr. Hoch said in “What I've Learned from E-Patients,” a 2005 article in the medical journal PLoS Medicine. He co-authored the article with the late Tom Ferguson, M.D., who started promoting online health resources in 1987. “My newfound frankness has been much appreciated, and none of my patients have become unduly troubled by these discussions,” Dr. Hoch says.
Currently the editor for the American Academy of Neurology's Web site for patients and caregivers (AAN.com/patients), Dr. Hoch went on to found braintalkcommunities.org with John Lester, information systems director for the department of neurology at Massachusetts General Hospital. A collection of more than 200 separate online support groups for people with neurologic disease, braintalkcommunities.org provides free resources “24 hours a day, seven days a week, for patients across the country and around the world,” Dr. Hoch says.
Not so long ago, doctors complained about patients showing up for appointments with printouts of articles from the Internet. Now, doctors are starting to admit that some of the knowledge their patients acquire through the “University of Google” is pretty good.
“Almost every patient who comes in with a neurologic condition these days has looked up information online,” says Orly Avitzur, M.D., a neurologist, medical writer, and editor-in-chief of the AAN's Web site, AAN.com. “I think it's a good thing when patients research their own condition and become aware of tests and treatment options. That helps form the basis for a better conversation.”
FOLLOW THE MONEY
But the quality of medical Web sites varies widely. In general, health information found on Web sites for government agencies such as the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) gets high marks from doctors. So do Web sites created by major medical institutions, such as the Mayo Clinic and the Cleveland Clinic. (See Resource Central, page 79.)
But medical Web sites sponsored by pharmaceutical companies or other for-profit enterprises should be approached with caution, doctors warn.
“The government sites are unbiased and don't accept industry funding, whereas many disease sites are sponsored by drug companies,” says Dr. Avitzur. “MultipleSclerosis.com, for example, is funded by Bayer HealthCare Pharmaceuticals. You have to be wary. The mission of such sites is to sell a drug.”
Dr. Hoch heartily agrees. “Follow the money,” he says. “Who is funding the site? What's the hidden agenda of the people making the information available?” One way to find this information is to read the “About Us” section of the Web site. A more general source is “A User's Guide to Finding and Evaluating Health Information on the Web,” from the Medical Library Association (mlanet.org/resources/userguide.html).
THE WISDOM—AND FOLLY—OF CROWDS
Dr. Hoch favors sites that allow visitors to comment and share information. “I tell patients to take part in the conversation. People will often find others on these sites who have educated themselves,” he says.
Obtaining medical information from non-professionals may sound risky, but Dr. Avitzur believes Web sites that consist primarily of patient exchanges correct themselves pretty effectively.
“I believe in the wisdom of crowds,” she says. “When something inaccurate gets posted in a chat room populated with enough people, someone will eventually come in and say, ‘That's not correct.’”
However, people don't always discriminate effectively among the many Web sites offering medical information. In 2002, Gunther Eysenbach, M.D., M.P.H., now of the University of Toronto, studied 21 people as they searched the Internet for answers to health questions he posed. Although they all claimed to have assessed the credibility of the Web sites they visited, none of them clicked on the “About Us” section of any Web site to look for conflicts of interest or other signs of bias. Most just used a search engine and accepted the information found in the first couple of hits.
GOOGLE IS NOT A DOCTOR
To reduce the danger of encountering biased or misleading information, Erin Mathieu, a postgrad student in the University of Sydney's School of Public Health in Australia, encourages doctors to promote Web sites that provide information backed by scientific evidence. In an article she wrote last year in the journal Medical Decision Making (“The Internet and Medical Decision Making: Can It Replace the Role of Health Care Providers?”) she noted that less than 50 percent of people who search for medical information on the Internet are likely to speak with a medical professional about what they find.
“With more and more patients turning to Dr. Google instead of their own providers to advise their health care decisions,” she wrote, “there is a need for more evidence-based medical information on the Internet.”
Medical Web sites, adds Mathieu, should encourage consumers to speak with their health care providers. Online information should be the start—not the end—of a conversation.
Furthermore, people trust information they can understand, says Yinjiao Ye, Ph.D., assistant professor in the department of communication studies at the University of Rhode Island and author of a recent paper in the Journal of Health Communication, “Correlates of consumer trust in online health information.”
More than 30 percent of people with some college education find online medical statistics “hard” or “very hard” to understand, she reported in the paper, while nearly 50 percent of those with a high school education or less reported the same. Therefore, she believes organizations that sponsor medical Web sites have a responsibility to present information clearly and without excessive jargon. What you can do is look for sites that have a separate section for non-professionals and share what you find with your health care provider.
WHEN CAREGIVERS SEARCH
Nearly half of the people who seek medical information on the Internet are searching on behalf of someone else, according to Leslie Kernisan, M.D., a geriatrician at the Over 60 Health Center in Berkeley, CA, and a clinical instructor in the Division of Geriatrics at the University of California, San Francisco.
Dr. Kernisan recently co-authored a survey of “Information-Seeking at a Caregiver Web site,” published in the Journal of Medical Internet Research. She found that caregivers not only seek medical information about specific ailments but also general information to help them prepare for the caregiving tasks that lie ahead.
“On the Internet, information is organized in disease-specific categories,” she says, “but people's concerns [in the survey] often went beyond the disease itself, to issues such as the decline of independence or of physical and mental function, and end-of-life issues.”
Dr. Kernisan was so impressed by the power of the Internet to convey caregiving information that she has become a senior medical editor at caring.com, a Web site devoted to providing information for caregivers.
“In the clinic, we help one patient at a time, and there's a shortage of geriatricians,” she says. “We can't do it all with face-to-face visits. Not only are there not enough providers, it's often difficult for caregivers to get out of the house. With really good online resources, we provide an opportunity to reach many caregivers with information that can be accessed anytime. Caring.com can't substitute for seeing a health provider, but if we can take some of that educational content I provide during visits—if we can make even a small fraction of that available on Internet—we'll have helped quite a lot of people.”
Although many doctors may still have reservations about Internet-based health information, “The horse has left the barn,” Dr. Kernisan says. “There's a lot of information out there, and patients are going to be looking at it, so we need to focus on creating better information and helping people decide which information is most credible.”