Patients can get caught in Web without advice
Deadly information sometimes traded on Internet
There are many horror stories of medical mishaps caused by information gleaned from the Internet. In one case, a person stopped taking Prozac because of what he read on the Internet. He became depressed when he quit taking the drug and almost committed suicide. In another case, a woman died from drinking a tea made from mushrooms she discovered via the Internet.
Although the lay person can be misled with false or confusing information, the Internet also can be an excellent resource for patients and family members to explore treatment options, learn about medical breakthroughs, and identify possible drug interactions, says Joyce Flory, PhD, creative director for Alliances Interactive, an Internet consulting firm in Alexandria, VA.
Information sheet makes Web use easy
What can patient education managers do? Teach patients and their family members how to use the Internet wisely. Create an information sheet that instructs people on how to evaluate the content of Web sites. Distribute them in your patient education learning centers next to the computers with Internet access, and encourage people to take a copy home to use when surfing the Web.
Flory offers suggestions on what to include on a sheet for evaluating Web sites on the Internet:
1. Check and double-check.
Don’t accept or act on Internet health care information blindly. In many cases, you may not know who’s behind the information. Take time to sift through the statistics and claims. Look for other reputable studies that offer the same or somewhat similar advice. Check out claims with your physician or a reputable source available on another site. For example, if you spot a miracle cure for cancer, you might want to check with some of the physicians on Oncolink (http://www.oncol ink.com/). Remember, don’t take action until you’ve thoroughly checked out the information.
2. Be skeptical of storefronts.
The Internet is similar to any other store. If somebody’s trying to sell you something or get you to call and place an order, ask questions before you do. Questions might include:
• Does the information hold up with scientific literature such as that published in the New England Journal of Medicine?
• What does your doctor think of the information?
• Who’s the person selling the product? Is he or she a reputable medical practitioner or just someone who set up shop?
Look out for scams
3. Look for red flags.
Be especially suspicious of people who refuse to give their real names and credentials through a signature or a sign file that appears at the end of an e-mail message or who don’t seem to have reputable medical credentials. Other red flags include:
• using testimonials from patients as if they were scientific evidence;
• making unsubstantiated claims;
• continually defending one treatment or course of action over another.
4. Develop a close relationship with your primary care physician.
Just because you’re conducting searches with the National Library of Medicine doesn’t mean you can afford to cancel any appointments with your primary care physician. There’s no substitute for a personal examination and a one-on-one discussion of your condition and health goals. Your physician is the only person who knows your medical history and test results.
Temper enthusiasm with caution
5. Don’t go overboard with the Internet.
If you’re suffering from a chronic condition such as diabetes, consider a face-to-face support group to complement your on-line support group. Or, take a workshop or seminar conducted by the hospital or a reputable health care organization.
6. Make sure the information is clear.
Can you understand the information presented? The content on the Web site should not be filled with undefined medical jargon or bizarre New Age terminology that leaves you feeling confused.
7. Check for timeliness.
Is the evidence and information provided on the site the most recent available? Does the site identify studies, reports, or articles written within the last two years? A 1992 study on breast cancer is of no value if it’s been contradicted by other more recent studies. To check for the latest studies, consult such sites as Medical Breakthroughs (http://www.ivanhoe.com/) and Reuters Health (http://www.reutershealth. com/).
8. Be realistic about the information you will find.
You won’t find the cure for cancer on the Internet or an instant solution to your health care problems. Nor will you receive a complete diagnosis or recommendation to go ahead with surgery. What you will find are opportunities to conduct on-line searches for specific medical information, to track down experts on rare diseases, to secure support from other people with the same condition, to get information on clinical trials, to track late-breaking medical news, and to explore alternative therapies.
Stick with well-known names
Give patients and their family members some suggestions of viable Web sites that you have checked out, and be sure that the information is reputable, advises Flory.
These sites will provide a means for comparison as they venture into other areas on the Internet. Flory suggests sites that are produced by university medical centers such as Oncolink which is produced by the University of Pennsylvania and involves many physicians. Government sites also are safe such as the Centers for Disease Control and Prevention (http://www.cdc.gov/), the National Library of Medicine (http://www.nlm.nih.gov/), and the National Cancer Institute (http://wwwicic. nci.nih.gov/CancerNet.html). Not-for-profit sites such as the American Heart Association (http://www.amhrt.org) make good suggestions as well as sites sponsored by respected medical centers such as The Mayo Clinic (http://www.mayo.ivi.com), and Johns Hopkins (http://www.jhbmc.jhu.edu).
[For more information on the Internet contact Joyce Flory, Alliances Interactive, 260 East Chestnut Street, Chicago IL 60611. Telephone: (312) 944-3654. E-mail: [email protected].]
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