THE DISRUPTOR: PatientsLikeMe
 

THE DISRUPTOR: PatientsLikeMe
THE DISRUPTION: An online community where patients can discuss and track medical conditions
THE DISRUPTED: The health-care industry, medical research

When Stephen Heywood developed Lou Gehrig's disease, his brothers Ben and James turned to the Internet to learn as much as they could. There was plenty of basic data about amyotrophic lateral sclerosis (ALS), as the condition is formally known, at sites like WebMD. But firsthand accounts about what the disease was like from the patient's point of view were fragmented and scattered all over the Web.

So Ben and James, both mechanical engineers, teamed up in 2004 with classmate Jeff Cole to found a Web site to consolidate those accounts and help patients track their progress. They called it PatientsLikeMe, and it immediately developed what many other social networks struggle to achieve: a deep and engaged community, driven by members with a personal investment in the site. It started with ALS patients eager to share stories of what did and didn't work for them but quickly grew to embrace users suffering from multiple sclerosis, Parkinson's disease and HIV/AIDS.

"If there's one patient in the world with a particular treatment, they're there," Ben Heywood says. "You see everything that everyone is trying." The site has only a few thousand members, but it is capturing 10 percent of newly diagnosed ALS patients every month.

For researchers, access to such an engaged community of patients is a fast bypass around restrictive privacy rules that tie scientists in red tape. "The existing setup is very slow," says Paul Wicks, an ALS researcher in London who got involved in the site in 2005. "For an old research project of mine, it took me about two years to get the questionnaire together and send it out. With this site, I can do the same thing in 30 minutes."

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