Community Care: Doctors and Patients Find Support in the Crowd

Slowly but surely, the medical profession is embracing crowdsourcing as a way to access larger quantities of information. Crowdsourcing medical contests have spurred on innovations in hard-to-treat diseases like ALS (also known as Lou Gehrig’s Disease). Cancer clinicians and researchers have been developing Cancer Commons, a crowdsourced database of clinical observations and treatment outcomes available to anyone (like researchers, oncologists, or patients) interested in cutting-edge treatment options.

Now, crowdsourcing  is beginning to create more specialized medical communities. In 2007, the New England Journal of Medicine began polling its readers on conditions with multiple appropriate treatment options. Poll participants – most of which are physicians, though some are students and patients – voted on the best treatment option. The NEJM published the results along with prevalent comments. For example, of 11,205 participants from 120 countries, 41% came to a consensus on the best treatment for a skin infection. With so many voices weighing in, NEJM’s treatment plan polls were essentially a collegial discussion on a global scale.

Another crowdsourced community for medical professionals is PediHeartNet. Begun in 1994 at the Children’s Hospital Central California, PediHeartNet is a listserv of primarily cardiologists and cardiac surgeons. Members email the listserv a description of an issue related to heart disease in children, and the membership community respond, flooding the inbox with relevant clinical experience and recommendations. With 1,500 members from over 60 countries, PediHeartNet has cultivated a global crowd of experts.

Patients, too, have turned to online communities for support and information. PatientsLikeMe is a database of thousands receiving treatment for life-changing medical conditions such as organ transplants, diabetes, bipolar disorder, and HIV. Personal experience is shared through forum discussions, private messages, and treatment reports, which enable patients to compare their healthcare experience. In a 2008 New York Times article, PatientsLikeMe co-founder Jamie Heywood explained that the website empowered patients to be proactive about their care and helped them to have more effective conversations with their doctors.  “People who use it will live longer; people who don’t, won’t,” Heywood concluded.

One of the problems of crowdsourced medical communities (and online communities in general) is that they are never as personal or dependable as face-to-face communities. A crowdsourced response to a medical condition will never replace a conversation with a colleague who specializes in that condition. Medicine is a field that requires both massive expertise and sensitivity, things that often get buried in the glut of responses from a crowdsourced community. Is there a way to separate seasoned experts from novices when crowdsourcing feedback for the medical community? How can crowdsourcing overcome its inherent remoteness in favor of more personalized medical communities?

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