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Patients who question their doctors are changing the face of medicine – and physicians are embracing the shift

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| March 11, 2014 11:58 AM ET

Activist patients, those who take matters of their health into their own hands, are changing the medical landscape.

Activist patients, those who take matters of their health into their own hands, are changing the medical landscape.

Last week I was in California for the Future of Genomic Medicine conference, and I heard a presentation by “the patient of the future.” Her name is Kim Goodsell, and she’s a patient of the well-known cardiologist Dr. Eric Topol.

Before Goodsell started having medical problems she was one of the most active people imaginable — a formerly world-ranked Iron Man triathlete and enthusiastic kite surfer. But then she noticed episodes of irregular heartbeat. As years passed the arrhythmia became increasingly common. And her fine motor skills were disappearing.

Specialist after specialist failed to identify the source of the problems. Finally, Goodsell’s own research led her to suspect a genetic malady — a mutation of a gene called LMNA. A genetic test confirmed her suspicions. Turns out Goodsell has a form of Charcot-Marie-Tooth disease, which causes her cells to make mistakes when they produce proteins.

Dr. Topol billed Goodsell as the patient of the future because she’s an activist patient, someone who regards her health as a collaboration between herself and her doctor. More and more patients are regarding their health in a similar manner.

In fact, activist patients are changing the way doctors practice medicine. Take the public health campaign, Choosing Wisely, which Canadians will begin to notice across the country this April. Last month’s Canadian Medical Association Journal ran a commentary about the campaign lead-authored by the University of Toronto’s Dr. Wendy Levinson. According to Levinson, Choosing Wisely encourages both patients and physicians to examine whether certain medical tests are beneficial to the patients.

Before I get to what I think is so interesting about Choosing Wisely, I should mention that certain aspects of the campaign concern me. I worry that it’s motivated by cost-containment strategies that could bias the public against preventive medicine. The campaign is a manifestation of an ongoing trend in the profession toward something called evidence-based medicine, which requires most every step in a patient’s care to be supported by science and academic research. I like most aspects of evidence-based medicine, but it can be tricky when applied to preventive techniques.

Some things that doctors do aren’t supported by science. At the Scripps conference, Nature editor Dr. Magdalena Skipper talked about the way negative findings — doing this prevents that — are really difficult to scientifically prove, but important for the future of medicine. To make the findings rigorous requires following thousands of patients for years at a time. That’s very expensive — and unless it could lead to a blockbuster drug or medical device, few groups have the incentive to spend that kind of money.

But that’s quibbling. What’s remarkable, to me, is the way Choosing Wisely relies on patients staying informed about their own care. Here is the Canadian Medical Association, the physicians’ professional organization, working on a campaign that appeals to patients to question their doctors. It’s encouraging patients to become activists. Such a thing would have been unimaginable even a decade or two ago. What an indication of the way the medical profession is embracing patient empowerment.

Activist patients are changing the way we practice medicine — and we’re likely to see more changes in future. Take Goodsell: Once she confirmed her mutation she became expert in the biological mechanisms of her disease. One form of treatment, she surmised, involved changing her diet to cut out sugars and to increase her consumption of omega-3 fatty acids, among other things. The changes seemed to help her symptoms, leading her to regain fine-motor control of her hands enough that she was able to use chopsticks and return to kitesurfing.

The ultimate indication of Goodsell’s control over her medical destiny? When her doctor wrote up her case history for publication, he listed Goodsell as a co-author. The account is to be presented at a meeting of the Heart Rhythm Society of physicians. The ironic thing, though, is that Goodsell won’t be able to see the presentation — because she isn’t an accredited physician. Goodsell’s story, and the Choosing Wisely campaign, both indicate that the medical profession has progressed a lot in terms of patient empowerment. But evidently, we still have some ways to go.

Dr. James Aw is the medical director of the Medcan Clinic.