American College of Physicians: Internal Medicine — Doctors for Adults ®

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Computers and shared decisions

Technology gets patients more involved in their own care, but how will physicians respond?

From the January 1996 ACP Observer, copyright 1996 by the American College of Physicians.

By Edward Doyle

NEW ORLEANS--The patient had been suffering from migraine headaches for months when Richard G. Rockefeller, MD, saw her. A neurologist, two internists and a psychiatrist had examined her previously but found nothing. So Dr. Rockefeller, a family physician in Portland, Maine, turned to a computerized differential diagnosis program to see if anything had been missed.

The computer program came up with a diagnosis of cluster headaches--but that was only part of the story. The next time the patient developed a headache, she read the computer printout that Dr. Rockefeller had given her and concluded that she was in fact suffering from cluster headaches. She checked the printout for information about the drugs used to treat cluster headaches and decided not to take them because of the potential side effects. But she continued to learn more about her headaches and how to control them. Eventually, the frequency and intensity of her headaches diminished until she no longer considered them a medical problem.

For Dr. Rockefeller, it was a dramatic example of the power of getting patients involved in their own care. "We give a lot of lip service to the healing power of physicians and their therapeutic touch," he said, "but I never imagined that a computer could provide so much help."

While the emphasis on getting patients more involved in their care has gained momentum over the past decade, it is only within the last few years that computers have become cheap enough and fast enough to help in the process. At this year's annual meeting of the American Medical Informatics Association (AMIA), physicians and patient advocates explained that there are now a handful of tools available--and they exhorted physicians to use them.

But before you run out and buy the newest differential diagnosis program, be warned: computer software is not the definitive answer. Dr. Rockefeller, who is also founder and president of the Health Commons Institute, a Portland-based organization dedicated to shared decision making, was quick to point out many of these programs focus on finding the right diagnosis rather than helping physicians work more closely with patients.

Debra A. Deatrick, executive director of the Institute, explained: "The architecture of those systems perpetuates the old model of the doctor as expert. You ask patients how they're feeling and then go into the back room and tap that information into the computer to produce several potential diagnoses."

The right stuff

So exactly what types of tools can physicians use to get their patients more involved in their care? Supporters point to tools like the interactive videodisc products from the Foundation for Informed Medical Decision Making at Dartmouth University. The videodiscs give patients detailed information and treatment options on conditions like benign prostatic hyperplasia and low back pain in easy-to-understand pictures and sound. And even more importantly, they allow patients to get information about their specific conditions.

But because videodisc technology is not widely available and is costly, physicians and patients are looking to other resources. The Internet and online services are becoming effective ways for patients to keep up-to-date about their health. Spurred on by recent estimates that a third of American homes have computers, many patient advocates envision a wired society in which patients have instant access to information about a variety of diseases and conditions. Speakers at the AMIA meeting described efforts to electronically link patients directly to medical information they need.

For example, one computer package for hemophiliacs provides electronic tools for patients to track infusions on their own, communications software to reach providers, programs to help manage weight and exercise and general information on the disease.

Advocates say these high-tech tools put more traditional, paper-based forms of patient education to shame. A one-time cancer patient at the meeting compared the printed educational materials his physician had given him to a placebo in terms of usefulness. Dr. Rockefeller noted that paper-based educational materials often fall flat because they cannot be tailored to address patients' individual needs and conditions.

Lukewarm response

Despite the optimism about the potential role of electronic tools, serious questions remain about how open physicians will be to bringing their patients into the decision-making process. "When intelligent patients take the time to look up information on their condition and take it to their doctors, you would think that physicians would be overjoyed at patients producing care for free," Dr. Rockefeller said. "But as soon as you go to the literature on a subject and study it yourself, you've learned things that the doctor doesn't know, and physicians don't generally like that very much."

Some physicians have already expressed reservations about making too much medical information available in cyberspace. Just over a year ago, an Internet service that provides information about cancer, OncoLink, was at the center of controversy. OncoLink was originally created by a radiation safety expert at Philadelphia's University of Pennsylvania to provide cancer patients with cutting-edge information on cancer, but physicians at the university appeared to be uncomfortable with the wide range of information made available to the public. The university fired the service's creator and pulled the plug on the service to prevent the dissemination of what it called questionable information. OncoLink is up and running again (although some question its integrity now that it is being run by physicians and not a layperson), but it points to questions about whether technology will actually be able to help bolster doctor-patient relations.

At Boston's Dana-Farber Cancer Institute, for example, where palmtop computers are being used to collect information about patient quality of life, there has been a lukewarm response. "Physicians think that they know how their patients are doing, that they don't need help eliciting quality of life information from them," explained Jane Weeks, MD, an oncologist at Dana-Farber who is coordinating the program.

To be fair, physicians may face difficulties using computer technology to work more closely with patients. For one, these tools can take time to use, a consideration for internists trying to see a new patient every 12 to 15 minutes. Dr. Rockefeller acknowledges that working through a patient's history with the Knowledge Coupler, the diagnostic program he uses with patients, takes about an hour. (Dr. Rockefeller himself only sees patients one day a week for his own research and does not make his living from patient care.)

But even if physicians choose not to use these tools with patients, they are still going to have to deal with an information explosion that is already giving consumers new and faster ways to access medical information. "Patients are increasingly becoming co-producers of their health, and they will increasingly get information and become informed," predicted Ms. Deatrick from the Health Commons Institute. "Physicians will find themselves in the position of not only providing information to patients, but helping patients navigate the increasingly complex system of information sources and interpreting that information alongside patients."

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