Mouse calls

The Internet is improving our access to medical journals, support groups, and specialists. But is it improving our health?

by Tinker Ready

SAMANTHA JANE SCOLAMIERO is neither a doctor nor a computer whiz. She never even finished her undergraduate degree. Scolamiero calls herself a "survivor" -- in her case, a brain-tumor survivor. After her 1990 surgery left her unable to work full-time, unable to read more than a few pages at a sitting, that was about all she could hope for.

Then she discovered a tool that helped her find her way back to the world: the Internet. Despite her disabilities, she figured out how to use her office e-mail to set up an electronic support group. Now, six years later, her "BRAINTMR" mailing list allows thousands of people to share information about good hospitals, bad doctors, and brain-tumor treatment programs from Alaska to Australia. And the mailing list has served as a model for similar online groups run by people with allergies, epilepsy, cancer, cerebral palsy, and scores of other conditions.

With this new community has come a calling. Scolamiero now considers herself an advocate for patients who want to use Internet access to get more out of the health care system, just as she did.

"The Internet has been a real salvation for me," Scolamiero says. She's so cyber-centered, she can't quite separate herself from the various PCs and laptops scattered around her cluttered office. Unable to remember a name, she pauses. "There are some words I'm not able to access right now . . . I like to say I had a Pentium," she says, referring to her brain, not her computer processor. "Now I have a 286."

The computer access that changed Scolamiero's life promises to revolutionize the role patients play in shaping their own treatment. In the past, doctors gave orders and patients complied. Now that patients can seek out the same journals, studies, and specialists doctors consult to make decisions, the balance of power is shifting.

The benefits are enormous, as Scolamiero can attest. But so are the risks. For every Web site hosted by a well-credentialed health center, there's one set up by a con artist selling the latest miracle cure. The question facing the medical community is this: now that the Internet is providing access to reams of medical data, will the typical patient translate it into better health care or simply get lost in a stew of information?

THE CONCERN that I have for the lay population is Dr. No-Name on the Internet," says Don Accetta, an allergist with a solo practice in Taunton, Massachusetts. "Is this someone who claims to be a physician and is practicing in his basement, or is this someone who is recognized by his colleagues?"

Accetta, as a doctor who regularly uses computers, is still in the minority among his colleagues. For all the inroads computers have made into our lives, they still play virtually no role in the delivery of medical care. Hospital accountants use them to work with -- and often manipulate -- complicated insurance-company payment systems. Medical computing has also crept down the hall to record-keeping departments, but interactive programs for doctors and patients have never really caught on.

For years, Harvard psychiatrist Warner Slack has been trying to move the hospital computer out of the finance office and into the clinic. In 1975, he invented a diagnostic program that would allow a woman to sit at a computer, answer a few questions, and get a prescription for medicine to treat a urinary tract infection if she needed it. His colleagues were appalled. Computers in the hands of patients, they said, would dehumanize medicine and threaten that most precious of interactions, the doctor-patient relationship. Slack argued that computers would enrich that relationship.

"I had thoughtful friends who said that the computer would kill medicine," he says. "I say, any doctor who can be replaced by a computer should be." His diagnostic program never caught on, but Slack later cofounded a research center designed to move the whole concept forward: the Center for Clinical Computing, based at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

A tall man with a trim white beard and a warm smile, Slack is hardly what one might expect of a doctor who quit seeing patients to devote himself to machines. Images of grandchildren dominate his World-Wide Web home page. The phone number listed there is out of date. And if computers are supposed to create a paper-free world, they've failed Slack; he must pick his way through an obstacle course of piles and milk crates to find anything in his Longwood Avenue office. One stack of boxes contains copies of his recently published book Cybermedicine: How Computing Empowers Doctors and Patients for Better Health Care (Jossey-Bass). Consumer advocate Ralph Nader wrote the book's foreword.

For more than 20 years, Slack says, fellow doctors ignored his talk about computer terminals that would give patients access to the information they needed to better participate in their own treatment. "Then came the Internet and the Web," he says, "and very quickly, people began to have computers in their homes."

Now, cutting-edge research once available only in medical school libraries is just a click away. Support groups, like Samantha Scolamiero's, have moved out of suburban living rooms and into cyberspace. Scientists looking for volunteers to test new drugs can reach thousands of possible recruits instantly via e-mail. "The potential is tremendous," Slack says. "The reality is that it has already been helpful. There are a lot of problems, but on balance, it is good."

He need look no further than his family to find an example. When Slack's infant grandson developed diabetes, the child's parents spent months sorting through conflicting advice from different doctors. Specialists said to "call anytime" for help managing the child's condition, then never returned the calls. So, Slack says, the family turned to Internet newsgroups and mailing lists, where they found "companionship, reassurance, and practical help."

Not every doctor is so enthusiastic. Privacy issues, for instance, emerge at every turn, and doctors who communicate with patients via computer wonder whether e-mail qualifies as part of the medical record. They also worry about what patients may find online: even well-meaning support groups can fuel rumors about ill-advised treatments.

It's not hard, for example, to stumble on a World-Wide Web page promoting something called "urine therapy." The Consumer Health Information Research Institute, a Kansas-based antifraud group, chose that site as one of the 10 worst on the Web. The group also lists a site selling an electronic device called the Zapper, which promises to kill "harmful parasites" in the blood. Detailed directions on how to use the Zapper -- only $97 plus $7 handling -- can be found in an accompanying book titled The Cure for All Disease.

The Internet has hardly cornered the market on snake oil; anyone looking for a bogus cure need only to walk into the local bookstore or glance at the supermarket tabloids. But computer links provide almost immediate access to an unprecedented amount of raw medical information, and there is no online Food and Drug Administration to police it.

Tools do exist to make quality control easier. Jill Shuman, of the Tufts School of Nutrition Science and Policy in Medford, Massachusetts, has set up a site called the Nutrition Navigator (http://navigator.tufts.edu). With the help of a well-credentialed advisory board, she and her staff evaluate the accuracy, balance, and timeliness of hundreds of nutrition sites. (They've got plenty to choose from: a search on the word "nutrition" turns up 143,698 sites, including an herbal weight-loss program, a US Department of Agriculture site, and a page spelling out "Cheese Nips Nutrition Facts.")

The Nutrition Navigator's top scorers include several all-inclusive federal government sites, a site called the Vegetarian Resource Group, and a Mayo Clinic site described as "a source of nutrition advice that you can trust." Among the losers: a site based on the screamingly popular Zone weight-loss program and the Popcorn Institute site, which the Navigator describes as "fluffy" and studded with "irresponsible, inaccurate statements about carbohydrates."

EVEN PATIENTS who use tools like the Nutrition Navigator may get a cool reception when they arrive at the doctor's office with a pile of printouts.

"I think the medical community may still be leery about giving people too much information," Shuman says.

Twenty years ago, when Warner Slack first started talking about "patient power," a colleague pooh-poohed the idea. "Patients want to be told what to do," the colleague told him. Today, that attitude hasn't changed completely. Though some doctors accept and even embrace the notion of the well-informed patient, others hold on to the old way of thinking, and would rather control the kind of information that gets into their patients' hands.

" `A little knowledge is a dangerous thing,' " says Slack. "Some doctors still say that today." Don Accetta, the Taunton allergist, remembers how strange it felt a few years ago when the FDA began allowing drug companies to advertise directly to consumers rather than just using medical journals to pitch drugs to doctors. His patients now ask for the drug "from the ad with the windsurfer in the wheat field" -- a popular television spot for a new asthma medication. At first, Accetta says, he was flustered, but he has adjusted: now he listens to patients' questions, and if the drugs they suggest seem appropriate, he writes a prescription. If not, he explains why. He takes the same approach with patients who do research on the Internet.

"You have to deal with it, and if not, you're going to get in trouble," he says. "More people are surfing the Net. They come armed with information." Sometimes, a patient will alert Accetta to an important study he hadn't read about. Sometimes, he spends precious office time sounding out patients who pull information from questionable sources.

The work of a Geneva-based group called Health on the Internet may help him with that task. They've published a suggested "code of conduct" that asks Web site sponsors to clearly indicate the sources of their claims and the credentials of their experts. Strict ratings will encourage people to use sanctioned sites, but they could also end up marginalizing the kind of information that makes the Internet so refreshingly subversive. As an unfiltered forum, it's one of the few places to air information about less conventional, but possibly worthwhile, treatments and therapies. Some of those may get caught in the anti-quackery nets cast over the Internet.

ALTERNATIVE TREATMENT will always have a place in rank-and-file health forums like Samantha Jane Scolamiero's brain-tumor group. Anyone with a computer and a modem can read or add to the 50 to 70 messages she sends out each day. (To contact Scolamiero, visit her home page at http://www.ai.mit.edu/people/laurel/samajane.html.)

Scolamiero works out of a small home office in Winter Hill in Somerville, Massachusetts, but none of the people she deals with daily can see her. If they could, they might imagine her in a white coat, rather than in a fading pair of fuchsia slacks and a long, thick ponytail. She sometimes has to remind people who ask for advice that she doesn't have any official credentials.

"I am not a medical doctor," Scolamiero writes. "I am a brain-tumor survivor who started the first online support group for patients, families, and medical professionals."

Scolamiero now works with a group called the American Medical Informatics Association to advocate for patients who want to use their computers to heal themselves. Sure, she says, people post misinformation on her list. Then other people come along and correct them. Scolamiero wants to make sure the patient's point of view doesn't get lost in the effort to "professionalize" the exchange of health information on the Internet.

"Anecdotal stuff is the stuff that patients find most helpful, but it's the stuff that scares doctors the most because it is not peer reviewed," she says. Rather than dismiss the Internet, she urges doctors to get online themselves and help patients learn how to scrutinize what they find there.

Warner Slack compares the rise of the Internet to another significant event in "patient empowerment": the 1956 publication of Benjamin Spock's Baby and Child Care.

"In the old days, there really weren't many ways for patients to become informed," he says. "Spock's book was a major breakthrough."

The book shook up the world of pediatrics, he says, but it sold 42 million copies and gave families more control over their children's health. More than 50 years later, the Internet may do the same thing for grownups.

"Doctors typically aren't used to well-informed patients, and have to adjust," Slack says. "But good doctors should welcome this."

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