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."

Faced with a torrent of information, Walther and her husband couldn't make up their minds about the safety of vaccines. "So we just ruled them all out," she says, a decision that nearly had disastrous consequences. When the new baby, Mary Catherine, was 11 months old, she came down with Hib meningitis, a dangerous disease of the central nervous system that could have been prevented by vaccinations normally given in the first six months of life. She spent 10 days in the hospital and had a slow but eventually successful recovery. And her mother finally located research studies that persuaded her vaccines are safe.

The most trustworthy information generally comes from Web sites run by universities, medical associations and the federal government. The National Institutes of Health operates a vast, informative site ( that serves as an umbrella for those of its 27 separate institutes and centers. One of the more useful NIH offerings is, a site maintained by the National Library of Medicine.

But even the best information must be handled with care. When he first noticed blood in his urine, Jerome Freedman, 61, a Silicon Valley software designer, went straight to the Web. "I self-diagnosed with four possibilities," he says. His doctor narrowed it down to one: bladder cancer. The usual treatment is to remove the bladder, but Freedman went back on the Internet and found research by a Harvard doctor suggesting that a less invasive approach, including chemotherapy, might work. With the approval of his hospital's tumor board, Freedman selected the bladder-sparing treatment. He has been in remission for three and a half years now.

Sometimes, however, all the Web sites in the world don't add up to a cure. "Anyone with psoriasis can get on the Internet and start talking about what they think is the cure," says Dr. Jim Nigro, a dermatologist in Houston. The trouble is, psoriasis can't be cured, despite all the remedies touted on the Internet. Internist Barron H. Lerner, a professor of medicine and public health at Columbia University in New York, says dealing with Webwise patients can be frustrating. "If you have 15 minutes and you're spending each visit talking about the crazy things they're finding on the Internet, you can never deal with more substantive issues," he says. But Lerner concedes: "It's good to be challenged to make sure that you're up to date and that you know what you need to know. It pushes you."

Whether they like it or not, family doctors are not the sole caregivers for some of today's patients. The right support group can provide useful information and build morale. "You can do good psychotherapeutic support online," says Morton Lieberman, a professor of psychology at the University of California, San Francisco, who has studied the work of breast-cancer groups. Soon after John McManamy, 51, was diagnosed with bipolar disorder, he found a helpful Internet bulletin board. (His eye was caught by a joke posted there: "You know you're bipolar when you think Robin Williams is too laid back.") A former financial journalist, McManamy now writes articles on mental health for a Web site called, where he adopted a title that was offered to him: depression editor.

Sometimes the Internet is the only way for nondoctors to learn about extremely rare diseases. When Genevieve LaGrow was 18 months old, the muscles in her legs began to tighten up. Three different pediatric neurologists diagnosed her with cerebral palsy, and one of them wanted to operate on her to lengthen her tendons. "She would have been mutilated by that doctor," says her father, Craig, whose family now lives in Colorado. Genevieve spent the years from the ages of 4 to 8 in a wheelchair while her father scoured the Internet for answers. Eventually he came upon a "bizarre" sounding ailment called dystonia, and then he located a New York physician named Susan Bressman. "It turned out that she was the guru of this tiny little field," says LaGrow. Bressman told him about a dopamine-based drug called Sinemet that can help a small subset of dystonia patients. At 8 a.m. on May 13, 1998, Genevieve took the medicine. By noon, she was a new person. Today, at 11, she's a champion swimmer.

All kinds of drugs are available on the Internet, some of them efficacious, some of them not. The most popular are the so-called "lifestyle drugs," such as Viagra (for sexual dysfunction), Propecia (hair loss) and Xenical (weight loss). Online sales of prescription drugs can be quite legal if the doctors writing the prescriptions are licensed to practice in the states where the purchasers live, and if the pharmacies are licensed to dispense them there. In the past year many questionable vendors have moved out of the United States to Web sites based offshore. U.S. Customs can seize illegal shipments, but many get through. Purchasers have no guarantee that the drugs aren't counterfeit or the wrong strength. And even a genuine drug can be dangerous to some users. Last summer an Illinois man named Robert McCutcheon, 52, died of a heart attack after taking Viagra and having sex three times with his girlfriend. He had bought the drug, without a prescription, from a now-defunct Web site. If McCutcheon had gone to a physician, his coronary artery disease might have ruled him out for a Viagra prescription.

Despite the risks, patient power can only increase in the years ahead, as information technology improves and more people learn how to use it. Pressures for cost containment and demands on doctors' time aren't going to ease up, leaving patients with both the opportunity and the need to monitor their own care. "The potential benefits far outweigh the potential harm," argues George Annas, chair of the health law department at Boston University and author of "The Rights of Patients." An informed patient and a receptive doctor can have a productive collaboration. It won't be as cozy as the old doctor-patient relationship, but it could be better medicine.

Use Caution on THE WEBCOMPLEXITY: A new RAND study says most health-related sites require at least a high-school reading level. But nearly half of all Americans read at an eighth-grade level or below. Other results: