FacetoFace Health (http://facetofacehealth.com) is designed to help patients match with each other to provide support and assistance. Healthcare message boards are great - but what if you could ask the person with the same medical conditions as you a direct question? Using healthmatch we match patients together with similar medical conditions, medications, treatment facilities and more.
All I wanted to do was to find patients with Lymphoma who had been to MDAnderson to ask them a question.
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James Heywood, cofounder and chairman of PatientsLikeMe.com, would agree. His site is like a Facebook for those who suffer from multiple sclerosis, Lou Gehrig's disease and other ailments, and allows patients to share stories, treatments, drug side effects and more. "We've had doctors say, 'Is it legal for patients to share with each other?' as if it's intrinsically wrong for people to share information," Heywood says. "I bought a new flat-screen TV two days ago. I can't imagine someone arguing whether it's ethical for consumers to be able to share their insights about televisions. I find it kind of astounding."
That's why 19,000 people—the number of users on PatientsLikeMe.com—have agreed to put intimate details, like whether a certain drug causes constipation, on a social-networking site. Collective knowledge—something that the Web, and in particular the social Web, is very good at enabling—allows them to put their disease in context. Am I taking a lower dose than other ALS sufferers? How normal is this side effect? Bringing health histories out into the open can provide answers to those questions, something that even doctors can't do.
It's also about gathering the collective wisdom, and making it available to researchers. "In the end, it's the same as open-source software," says Heywood. "If you can see all the information, you can correct the errors." Drug companies and doctors are far from infallible, and in this way the PatientsLikeMe community serves as a useful check. The site is, in effect, building an enormous database of patient data that can determine whether drugs and treatments are having the desired effect.
Of course, such research is what economists call a positive externality—it doesn't necessarily help the person doing the sharing. That might limit the appeal of transparency. But this is the era of the "overshare," after all, where deeply personal information regularly makes it to blogs and MySpace pages. And the trend has two powerful backers: both Obama and McCain have released their health records to the public.
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