The patient-to-patient network
When brothers Ben and Jamie Heywood, both engineers at MIT, learned that their other brother, Stephen, had ALS (Lou Gehrig's disease), they were frustrated by the lack of reliable information and support online. In 2004 they launched PatientsLikeMe as a destination for visitors to share personal stories, medical histories, and responses to online questionnaires. Today the site has 200,000 users covering about 1,800 diseases.
Patients aren't the only ones finding value in the content on PatientsLikeMe. The company makes money selling its users' data to drugmakers, such as Merck (Fortune 500) and , Novartis (, and other research institutions, like universities. Even with all the privacy laws that regulate patient data, PatientsLikeMe, based in Cambridge, Mass., is able to bundle and release its network's information because, as Ben Heywood says, "we're radically open about it. We tell our members exactly what we do with their data, where it's going, and for what purpose." And the purpose, they argue, is for the greater good: The data can be used to make better, more targeted drugs and more efficient devices. Paul Wicks, a neuropsychologist and research director at PatientsLikeMe, says the company is expanding its patient-driven, standardized questionnaires, and envisions a day when patients can transfer data from health monitors and other devices, such as )Google's (Fortune 500) augmented-reality Glass product, to create a "learning health care system." ,
The doctor-to-patient network
Practice Fusion does not at first seem like a social network. The company provides a cloud-based electronic medical records system for doctors, then sells ads for this platform that subsidize the free service. CEO Ryan Howard knew that doctors would never switch to such a system -- even a free one -- unless it offered them more convenience. To win over physicians, Practice Fusion threw in a bunch of tools. Most crucially, it allowed MDs to easily transfer medical records to one another. Nearly 150,000 medical professionals are on Practice Fusion, and the service touches nearly 60 million patients. The reason doctors have been quick to adopt the service, which was founded in 2005 and has about $64 million in venture capital funding, is the intra-network information sharing. "That's the sell," says Howard.
Practice Fusion has just launched a new service, Patient Fusion, that allows patients to post doctor reviews and check their schedules for an opening before booking an appointment; it's like TripAdvisor meets OpenTable for health care. New York-based ZocDoc already offers those services free to patients, but doctors must pay the company $300 a month, an amount CEO Cyrus Massoumi says they're happy to shell out because the service "cuts out paperwork, adds convenience, and can open up their practice to new people."
Indeed, the way we find doctors -- and our access to them -- has always revolved around networks; these new, online platforms simply upend all tradition. As Jamie Heywood puts it, "Social networks have existed in health care for 100 years -- as guilds, mailing lists, and simply who you knew."
One of the newest networks is HealthTap, an online hub of 1.2 million doctors worldwide who field questions from anyone, anywhere. (The homepage provocatively keeps a real-time ticker of "Answers served," now approaching 670 million.) What works as information delivery to patients is reputation building for doctors, and -- just as at PatientsLikeMe and Practice Fusion -- the ecosystem offers a trove of data to mine or use to build applications.
The risk with any of the new networks, of course, is that a big social network could decide to leverage its massive scale to enter the health care business. Jamie Heywood estimates that of the 400,000 Americans with multiple sclerosis, 300,000 of them are probably on Facebook, while 30,000 are on PatientsLikeMe. Facebook theoretically could track its users' behavior to identify those with MS and exploit its position as the largest registry of MS patients in the world. But managing privacy issues and monitoring the quality of the customer experience for hundreds of diseases is incredibly complex. It's a barrier to entry that health care disrupters are counting on -- and what they hope will make their social networks especially valuable.
This story is from the April 29, 2013 issue of Fortune.
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