And It's About Time There Was Some Support For Cushing's!
Last year 100 million people turned to the Web for medical advice. Some of what they got was useful, some was confusing and some just plain bad.
"I have patients coming into my office every day confused or scared out of their minds from stuff they read on the Web," complains Dr. Sujana Chandrasekhar, associate professor of Otolaryngology at the University of Medicine and Dentistry of New Jersey. Call it Web-induced hypochondria. According to Harris Interactive, nearly 100 million people consulted the Web for medical advice and 70% of them took seriously the proffered advice and diagnosis.
"A few months ago, I had a new patient who came into my office and was antagonistic toward me right off the bat," says Dr. Benjamin Chang, assistant professor of plastic surgery at the University of Pennsylvania School of Medicine. The patient's primary physician had ordered a biopsy on a 4-millimeter melanoma. After reading his pathology report and then consulting a medical Web site, the patient was convinced he was a goner. The pathology report stated that his tumor was level four. "He had confused the level with the stage and gone on the Web and found that stage four meant the cancer was far advanced and that he'd have almost no chance of survival," says Chang. After calming the patient, Chang later removed the melanoma with a relatively simple procedure.
Seeking health information is the third most common reason people go online—after weather and sports, and just ahead of pornography. It's not just the patients who are tapping the Web. Doctors like Chang hot-sync their Palms to Web sites like Epocrates, where they can download complete and updated pharmacology references with specific dosages and link to Drugstore.com for pricing. Other docs are using wireless PDAs within hospitals, like Cedar-Sinai in Beverly Hills, Calif., to access medical records and get lab reports. Birmingham, Ala.-based HealthSouth has partnered with Oracle to build a state-of-the-art $225 million hospital where all patient information, including X-rays, will be digital, and patient beds will be equipped with Web-connected display screens.
Is this a blessing or a curse as far as the layman is concerned? "There is a tremendous amount of information out there, but what is missing is an accuracy or reliability filter," says Dr. Stephen Barrett, a retired psychiatrist who runs Quackwatch, a watchdog site. Ill-equipped to understand the difference between stages and levels of cancer, Dr. Chang's patient had almost worried himself to death. According to a recent study done for the California Healthcare Foundation, medical information on the Web is written in a way that is too difficult for most people to understand and seemingly official information on medical sites is often incomplete or misleading.
Take, for example, the Wisconsin Institute of Nutrition's site at www.nutritioninstitute.com, which features medical advice from Dr. Bruce A. Semon. Click on Ear Infections and Dr. Semon will tell you that "Ear infections are caused by bacteria at the back of the mouth and at the beginning of the tubes leading to the ears." He goes on to argue that a common digestive yeast known as Candida albicans helps harmful bacteria grow in the throat. So, to eliminate yeast from your system, Semon suggests using a yeast-killing drug, like Nystatin, as a first step.
However, according to board-certified ear, nose and throat specialist Chandrasekhar, most ear infections are actually caused by viruses that live in the back of the nose. She says there is no basis for treating ear infections with antiyeast medicine and warns that Nystatin can have unpleasant side effects, including nausea, vomiting and diarrhea. Another infrequent but potential side effect of Nystatin is Stevens-Johnson syndrome, a disease that causes painful blistering and sloughing of the skin all over the body.
If you check Semon's background, you'll find that his experience has been in psychiatry, nutrition and homeopathy. Much of the information on his Web site seems designed to get you to buy his book, Feast Without Yeast.
Of course there is lots of useful medical
information on the Web. Medscape's Dr. George Lundberg, who was the
long-time editor of the Journal of the American Medical Association,
has five rules for evaluating the trustworthiness of a health site:
Denver-based HealthGrades has taken reams of federal data on things like mortality rates by procedure, and applied risk-adjusted weightings to them. The result is a star system that rates hospitals, nursing homes and other providers on its Web site.
Suppose you live in Manhattan and are thinking of trying in vitro fertilization. Click on to HealthGrades.com and you'll learn that at age 38 to 40, you'd probably be better off at New York University than at places like Advanced Fertility Services, PC, a private practice in upper Manhattan and Larchmont. According to HealthGrades, 26% of cases involving fresh embryos from nondonor eggs resulted in live births at NYU Medical's IVF, Reproductive Surgery and Infertility Center. Corresponding numbers were 14% for Advanced Fertility Services. The national average is 17%.
HealthGrades' Hospital Report Card section rates 5,000 hospitals on things like coronary bypass surgery and cesarean-section births. It also allows patients to assign their own satisfaction grades to physicians.
"Eventually we'd like to be able to post reports on whether doctors have been sanctioned," says HealthGrades Chief Executive Kerry Hicks. "It's about full disclosure and letting patients share information."
Also useful to many people are bulletin boards where worried men and women can find solace from the similarly afflicted. Medical forums and discussion boards dwell on such specific illnesses as headaches and depression, hypoglycemia and Burkitt's lymphoma (see table "Webs of Support").
In 1992 Alice Lotto Stamm, 55, was going through a difficult menopause when she discovered a local bulletin board where she learned about the change from other women. She described a hot flash as a power surge, which became a catchphrase. Now Power Surge (www.power-surge.com) is a popular Web community on menopause.
Stamm gave up her job in the real estate business and now runs the site from her Brooklyn home. Stamm conducts online forums with experts, such as Dr. Susan Love, and offers Ask the Experts columns, weekly chats and more than 40 message boards. On these forums women compare notes about techniques for coping with hot flashes and other symptoms of menopause. Topics include experiences with soy products and hormone replacement therapy, and discussions on the effects of menopause on libido. Power Surge has so much traffic, that Stamm recently agreed to enter into a cobranding partnership with AOL. Boasts Stamm, who goes by the screen name Dearest: "I contacted AOL Chief Barry Schuler through an instant message."
Mary O'Connor, 53, a piano teacher from Fairfax, Va., began "lurking"—the online term for people who join a group and read message boards and chats without participating—at Power Surge five years ago. She had a history of Cushing's syndrome, a rare hormonal disorder, which made her menopause complicated and difficult. She had trouble distinguishing the symptoms of Cushing's, such as weight gain and facial hair growth, from those of menopause. She says the Web was a safety net: "You realize you're not alone."
With Stamm's help, O'Connor launched her own online group, Cushings-Help.com (www.cushings-help.com). She says that the forum for her rare ailment has 350 members. As a result of the online community, members of the group have met with a team of leading endocrinologists. "It's possible some medical research will come out of this meeting," she says. "This would not be happening without the Internet."
Vicki Gewe, 24, of Pomona, Calif. suffers from chronic migraines so severe that, even after trying 45 different remedies, she had to drop out of her Ph.D. program. "I remember I was having the worst migraine of my life—so sick that I couldn't even pick up the phone to ask my mother to take me to the emergency room. All I wanted to do was die. I never felt so alone in my life."
Two days later Gewe found a headache site, ACHE (www.achenet.org), and began doing research on migraines. "It was a way for me to take back control of my life," she says. Gewe connected with others and found several medications she hadn't tried. "The doctors had told me there were no new medications," says Gewe. She started taking a potent Opiod medication, and can now function normally.
Looking for help from fellow sufferers? Try medical search engines, like the National Library of Medicine-sponsored MedlinePlus (www.medlineplus.org). Or surf for disease-specific sites. Not everything you find will be useful. "There's lots of garbage out there. Many groups are poorly moderated, based on personal opinion and backed by flawed research," complains Douglas Bank, 35, an engineer at Motorola and a testicular-cancer survivor. Bank is cofounder of the Testicular Cancer Resource Center (www.acor.org/diseases/tc).
To help you make the best use of what's out there, Best of The Web's Health & Fitness section reviews 35 reputable sites. Here, you'll find reviews of another 135 health and fitness sites. Just a word of sensible advice: Don't try to be your own doctor by using the Web.
Howard and Judi Wolinsky are coauthors of Healthcare Online for Dummies.
Click any thumbnail to view the larger image.