The New Patient Power

Austin Maxwell, 13, and his mother, Janet, 45, of Modesto, Calif., rarely go to doctors anymore. "I don't need them," she says. Maxwell prefers the Internet. "I use that instead of the doctor because [Web sites] have the most up-to-date information," she says. Twelve years ago Maxwell did what no doctor could do for her: she figured out what was wrong with baby Austin. He suffered mightily from stomach distress; he was "ill, thin, really cranky," his mother says. Her doctor offered theories--an allergy to detergent, a reaction to breast milk. "It seemed like everything I brought up, he had a pat answer for," Maxwell recalls. Then she saw a television news program about a little girl with a gastrointestinal disorder called celiac disease. The symptoms were just like Austin's. Maxwell's sister, a nurse, consulted a medical manual and learned that celiac sufferers should not eat wheat. Maxwell stopped feeding gluten products to her son. "He was better the next day," she recalls. "He got so well, we never really went back" to the doctor.

Linda Kemp of Nashville, Tenn., uses the Internet to aid her doctor, not to replace him. Back in 1996 she was diagnosed with a rare spinal condition called syringomyelia, the painful affliction that crippled the great golfer Bobby Jones. Two years later, her condition worsening, Kemp began to search the Internet. Eventually she located an online support group where she learned about a drug called Neurontin. Her doctor "thought it was for seizures, which it is," says Kemp. "But it also helps the pain from this disease. He probably never would have thought about Neurontin if I hadn't asked him for it." Today, Kemp, 52, walks with the help of canes. "I get around a whole lot better than most people that have this," she says. "The Internet has just been a lifesaver for me."

Both for better and worse, the old doctor-patient relationship is breaking down. The traditional, paternalistic model of care--the all-knowing doctor, the trusting patient--has gone the way of black bags and house calls. The medical world teems with agents of change: cost-conscious managed care, strident TV ads for prescription drugs, unproven but intriguing alternative therapies, voracious liability suits, lobbyists working every corridor from the statehouse to Capitol Hill. But over the past decade or so, some of the most sweeping changes have been quietly brought about by the Internet. Today's wired medical consumers have powers earlier patients never dreamed of.

They can learn about the latest research, the newest drugs, the most promising therapies for even the rarest diseases--often staying a step or more ahead of their own doctors, particularly the harried generalists who serve as HMO gatekeepers. They can draw emotional support and practical advice from groups of fellow sufferers all over the world. They can buy medicine online, legally or otherwise. They can bombard their doctors with e-mailed questions, suggestions and requests for services. But if a little knowledge is a dangerous thing, what about a mountain of knowledge? And if some Internet information turns out to be incorrect, or irrelevant to a particular patient's condition, who's to tell?

It's already too late to turn back. The Web is a regular source of health or medical information for 52 million Americans, according to a study last year by the Pew Internet & American Life Project. Patients and their families do more Web surfing than investors, students or people who buy things online. But Pew found that most "health seekers" worry about getting unreliable information. Lee Rainie, project director for Pew, told a federal panel: "Too often, they are stumbling around cyberspace unaided."

Sometimes the sheer volume of information on the Web can be overwhelming. When Suzanne Walther, a medical technologist from Tennessee, was pregnant with her third child in early 1999, a friend tried to convince her that vaccines are not safe or effective. Walther went to the Internet for more information and was stunned by what she found. "I typed in 'vaccines,' and there was a thousand Web sites," she says. Many were posted by parents who believed their children had been hurt by vaccines. "I found diabetes, MS, autism--an incredible list of diseases," Walther says. One site she consulted claimed a child's asthma had been caused by vaccination. "My 8-year-old had asthma," she says, "and I began to wonder if it was my fault."