Medical Research and PatientsLikeMe

Every startup has a frequently told founder’s story. Ebay’s (apocryphal) story is about the founder helping his girlfriend with her Pez Dispenser collection. PatientsLikeMe’s story is about the founders watching their brother die. Ben and Jamie Heywood’s brother Stephen had ALS, the debilitating disease forever associated with Lou Gehrig. As they worked to improve his condition, they realized that data sharing among the community of sufferers could be a powerful medical tool. They founded PatientsLikeMe as a site where people come together online not just for the moral support of sharing their stories, but for the concrete medical value of aggregating data that official medical channels don’t have the resources or inclination to gather.

It’s a great concept, managed very well. I’ve always thought of the web as a tool for finding “people like me,” people who’ve encountered and solved my problems before me. Think about your own experience. When you’re looking to resolve some technical problem, what kind of site is most likely to be the one that helps? How often is it the official support site for a big company? I’ve found it’s almost always a fellow sufferer who makes the biggest difference. It’s the same way with medical conditions. Who is the most likely person to give you straight and credible answers about living with your disease? Somebody else with the same disease. Your doctor wants to help, and that is of course where your medical advice starts, but ultimately he’s not facing the same situation you are.

If you want to learn more about the site, I highly recommend Jon Udell’s conversation with Jamie Heywood or the TEDMED talk embedded below.

Can this really make the kind of difference that a proper medical study can? Nature Biotechnology just published a paper from PatientsLikeMe that mined their community of ALS patients to refute a dubious claim that lithium was slowing the disease. It’s an important result, and will certainly be the first of many insights that can be made more quickly and more cheaply by working directly with data volunteered by the patients themselves.

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