Should you crowdsource your medical problems?

Health and medicine explained.
Oct. 6 2010 3:27 PM

The Doctors Will See You Now

Should you crowdsource your medical problems?

Screen grab from patientslikeme.com. Click image to expand.
Patientslikeme.com, a crowdsourced medical-advice site.

Sometime in 1995, an e-mail from China arrived in my inbox with a desperate request for medical advice. I was a naïve medical student at Johns Hopkins University and an early adopter of the modem; the e-mail's author was identified only as "Peking University." In broken English, the message described a 21-year-old woman who had felt sick to her stomach and within days lost all her hair. This problem went away, but a few months later, "She Began to facial paralysis, central muscle of eye's paralysis, self-controlled respiration disappeared," and needed to be put on a ventilator. "This is the first time that Chinese try to find help from Internet," the message explained. "Please send back e-mail to us." With immature confidence I consulted some texts and replied that maybe she had a weird form of lupus. I never heard back and figured it was a prank.

The following year at the supermarket, I was browsing the August issue of Reader's Digest and saw a piece titled "Rescue on the Internet." It turned out that I wasn't the only one who'd replied to the posting, and the whole thing had not been a hoax. Incredibly, hundreds of doctors had seen the brief message and correctly determined that the patient was being poisoned by a tasteless, odorless heavy metal called thallium. Soon after, Chinese doctors were able to give an antidote to save the woman's life. (She did end up permanently disabled.)

In 2006, Wired magazine coined the term "crowdsourcing," to describe the process of seeking a problem's solution from a wide community, often online. Such collaboration certainly didn't come naturally to doctors. For millennia, they'd worked as solo practitioners who jealously guarded their secrets. But the Chinese e-mail episode shows how large groups of doctors might come together to solve a problem. More than 1,000 trained medical professionals independently guessed at the cause of the woman's illness, and while many were wrong, almost one-third suspected thallium poisoning. That was enough to get her doctors in China to consider the possibility and then confirm it.

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In many ways, such crowdsourcing resembles an expert poll—sort of like Trident's claim that "four out of five dentists" recommend sugarless gum, minus the commercial bias. And it works. One example: the New England Journal of Medicine hosts a weekly, online "image challenge," which shows mysterious x-rays or biopsies and asks for a diagnosis via multiple-choice. I don't often pick the right answer, but if you look at the aggregate choices from tens of thousands of other doctors around the world, the plurality invariably hits the mark.

Doctors in the United States have found help from their peers for real-life situations, too. Earlier this year, an internist (and sometime Slate author) named John Schumann posted the details of a peculiar case to a widely-read medical blog. A friend of his had developed inexplicable weight loss, low blood counts, and a weird, softball-sized mass in his liver. A dozen doctors saw the MRI scans and other test results online, and about half came up with the correct diagnosis: a benign growth of blood vessels.

Debunking the myth of the lone maverick, health researchers suggest that groups of doctors outperform individuals not only in diagnosing problems but also in treating them.  In 2007, NEJM began polling its readers for consensus opinions on tough treatment questions: how to handle an abnormal prostate cancer screening test, how to treat an athlete's skin infection, what to do for hepatitis C infection, and a few others. Responses from almost 20,000 doctors across the globe were tabulated.

Still, patients may be uncomfortable turning over their care to a majority vote of faceless doctors. But the reality doesn't have to sound so scary and impersonal. In some cases, crowdsourcing works by soliciting many ideas, and then having designated subspecialists vet them. (As on Wikipedia, not all contributors are given equal authority.) At major medical centers, for example, a group of experts called a "tumor board" reviews tough cancer cases as a group, e-mails around the country for advice on the hardest ones, and then discusses the options with the individual patient. In my own field of pediatric cardiology, more than 1,500 doctors worldwide subscribe to an e-mail list for crowd-sourcing tough issues, but the final decisions are left to the cardiologist who knows the patient.

Doctors can draw on group consults when necessary, but nonphysicians rarely have access to the power of crowd-sourced medicine. To be sure, many patients with complex or poorly understood medical problems like amyotrophic lateral sclerosiscongregate in large virtual communities such as PatientsLikeMe, where they share details of their medical treatments and symptoms with each other—and occasionally even launch their own unregulated and informal drug trials. These communities provide some helpful information and support for many people.

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