Amyotrophic lateral sclerosis

Tweet your chart: Why social sharing of medical data is a good idea

December 17, 2010: 5:00 AM ET

Concerns over digital privacy, especially of medical records, have never been higher. Yet startup PatientsLikeMe says there's much to be gained from the crowdsourcing of ailments -- and treatments.

PatientsLikeMeOver a decade ago, Ben Heywood's brother was diagnosed with Lou Gehrig's disease, a fatal neurological disorder. Back then, people didn't post status updates or Tweet about what they had for lunch, let alone share their diagnoses, symptoms and treatments with web-based social networks.

Determined to find an outlet for patients to share experiences with one another, Heywood  (along with two co-founders, another one of his brothers and a fellow MIT engineer) launched PatientsLikeMe in 2005. Today, the online community has amassed over 80,000 members, many of whom share intimate details—like symptoms of sexual dysfunction and diarrhea and the exact dosage of each drug they take—with each other. Over 10,000 PatientsLikeMe users opt to make their profiles "public," which means they're accessible to anyone on the Internet, not just other members.

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