March 6, 2000

Web Research Transforms Visit to the Doctor

By GINA KOLATA

EW YORK -- Victoria Schlesinger had a puzzling rash on her face, so she visited her doctor to ask what it was. The doctor told her she might have lupus, but declined to elaborate.

"She said, 'Let's not talk about it until we know,"' Schlesinger said, a remark that only served to terrify her. "I walked out of there thinking, 'This can't be good."'

Schlesinger, 31, the chief counsel for the Teligent communications company in Vienna, Va., had never heard of lupus and was too intimidated to press her doctor for more information. But, like more and more patients in recent years, she also knew she had another resource. She went to her computer, typed in "lupus" and clicked.

The Web sites that popped up were unsparing in their details about the disease, which is caused when the body's immune system attacks a patient's tissues and organs. While lupus can range from very mild to life threatening, Schlesinger found descriptions that emphasized the grim outcomes.

"I will tell you, I was pretty shocked," Schlesinger said. "I looked up this thing they thought I had and I saw things like, 'survival rates.'"

She turned out not to have the disease. But partly because of her doctor's dismissive remarks, she also ended up changing physicians.

In interviews, doctors and patients say the Internet has profoundly changed their relationships. With an estimated 100,000 medical Web sites, patients can look up any disease, drug or medical condition in seconds. When a doctor so much as mentions a possible diagnosis, many patients rush to their computers to learn more about it. When a doctor suggests a drug, patients go online to find its side effects. And when they arrive at their doctor's office, more and more patients are bearing pages of information printed from Web sites.

"It's a massive revolution," said Dr. Rita Charon, a specialist in internal medicine at Columbia University's College of Physicians and Surgeons. "It altogether shifts what goes on when a patient comes in with pages of downloaded stuff and half the time the doctor looking at it has never seen it before. There's a whole new set of emotions present."

The situation is complicated by time constraints on doctors who are part of managed care groups, said Prof. E. Haavi Morreim, an ethicist at the University of Tennessee College of Medicine.

"A lot of patients come in with this sheaf of papers," Morreim said. "A lot of it may be completely irrelevant, or it may be bad information -- who knows what you're getting off the Net. Now the physician has to spend a lot of time sifting through this stuff and explaining. The physician either resents spending the time or truly doesn't have the time. Then the patient may feel he is being given short shrift."

Dr. Thomas R. Reardon, a general practitioner from Portland, Ore., who is president of the American Medical Association, said that while "we do support patients having access to good, reliable, information," the problem is that the information on the Internet varies from sound to irresponsible. "Right now, anybody can put anything on the Internet," Reardon said.

In a statement the medical association warns, "The AMA is greatly concerned that a substantial proportion of information on the Internet might be inaccurate, erroneous, misleading or fraudulent and thereby pose a threat to public health."

Nonetheless, Reardon said, doctors are going to have to adjust. "I think this is the wave of the future," he said.

Web sites include those sponsored by responsible groups like the National Institutes of Health and the American Heart Association as well as ones run by purveyors of herbs and supplements or of unproven treatments like coffee enemas for cancer.

They include sites put up by hospitals and medical centers looking for business and by individual doctors, some of whom provide links to articles in medical journals and others who say they have secret cures. They also include countless chat rooms for patients, their families and the worried. More sites are added each day, like one to be available soon run by a company formed by the American Medical Association and six doctors associations.

As Schlesinger discovered, those who search for medical information soon find themselves buried in it. And some find themselves duped, doctors say.

Some fields, like plastic surgery, are almost magnets for misinformation, doctors said. "There is so much plastic surgery on the Net," said Dr. I. Kelman Cohen, a plastic surgeon at the Medical College of Virginia of Virginia Commonwealth University in Richmond. "Look younger, look beautiful, have a peel at lunch and go out shopping in the afternoon."

One highly educated woman went to see a doctor who advertises widely on the Internet that he does plastic surgery. The man is actually an oral surgeon, Cohen noted. "He says he is board certified, but he doesn't say in what," Cohen said. The woman wanted plastic surgery for her eyelids. Cohen said she ended up needing a skin graft from his group to repair the operation by the oral surgeon.

Many patients check out the Internet before they go to their doctors, deciding sometimes what they think their condition is or what drugs they need or what drugs they would refuse to take. Doctors can be taken aback.

"Some doctors deal well with it, some don't," Reardon said.

Some doctors make no pretense of being interested in the Internet data of their patients. Dr. Albert Kligman, a dermatology professor at the University of Pennsylvania Medical School, says he knows what is about to happen when he sees a patient carrying in a pile of printouts from Web sites.

"They say, 'Doctor, I have a few questions,"' Kligman said. "Then they take out about 200 of them. I tell them: 'I only have 12 minutes. I can examine you or I can answer your questions. Make up your mind."'

Other doctors say that even though they may become frustrated when patients look up every symptom, every diagnosis, every medical test and every drug on the Internet, the information can sometimes do more good than harm.

Dr. Michael Lockshin, a rheumatologist at the Hospital for Special Surgery in Manhattan, said: "I've had a bunch of people say, 'I've been chasing down my symptoms, and this is what I think it is, and my doctor hasn't paid attention to me.' About 50 percent of the time when I see patients like that, they're correct."

But more often doctors say they are peeved by the new demands being placed on them, frustrated in their efforts to convince patients that a prescription drug is not a poison or that a new treatment detailed on the Internet is not proven and annoyed when patients tend to believe that the information from the Web is right and their doctor is wrong.

"If they take a drug and they have a lousy response to it, they will go to a Web page that says it's a poison," said Dr. Alan DeCherney, an infertility expert at the University of California in Los Angeles. "You send them to the reputable pages, but they don't want that. They don't listen because it's not what they want to hear."

Some patients and their families, however, tell a different story.

Erin Goldstein, legal recruiter for the McCormick Group in Arlington Va., said the Internet was the first place she turned when doctors diagnosed a brain tumor in her mother last year.

"I was feeding in keywords as fast as I could," Goldstein said. It was terrifying, at first, she said, adding: "Everything you read says, 'prognosis very poor,' 'traditional protocols showing little effect."'

But, she said, when her mother's biopsy results came back, Goldstein at least knew what they meant, and she was able to focus her Internet research.

"It didn't take me quite as much by storm," she said. "I think you get panicky when you don't understand." Her father, Goldstein said, "wanted to defer to the doctor's expertise, but that really wasn't sufficient for me."

Armed with her Internet research, she said, she peppered her father with questions: "Why did the doctor choose this over that? I know there are these five protocols. Why aren't they doing a different surgery? Why why why why why?" She also questioned doctors she found on the Internet. "I go to doctors online to sort of hone the information I have read," Goldstein said.

She stayed in touch with relatives of other brain cancer patients through Internet chat groups, finding their experience and expertise immeasurably helpful.

Cathy Flanagan, a 35-year-old lupus patient in Manhattan, said she regularly went to the Internet to learn about her disease and to share experiences with others who were taking the same drugs and who, like Flanagan, had a particularly severe form of lupus.

"Some of the medications we take have horrible side effects," Flanagan said. "It's nice to be able to chat with someone else who has it."

Others say they turn to the Internet to learn what their medical test results mean. When John Franz, a 42-year-old engineer who lives in Moorestown, N.J., discovered that he had an unusual pattern of blood cholesterol, he immediately turned to the Internet. He went to his doctor to discuss his research, but Franz said, "He didn't think it was important." So Franz changed doctors.

"Patients now have an active role," Franz said. "With managed care you almost have to. It's up to you now, and if the doctor's not going to support that, you don't have to be involved with them."

Copyright 2000 The New York Times Company

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