Paul Wicks*, PatientsLikeMe.com, Cambridge, United States Track: Practice Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: Auditorium Date: 2012-09-15 09:00 AM – 09:45 AM Last modified: 2012-09-12

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Innovations abound in the field of medicine 2.0 – everything from mobile health apps to social networks, online portals, device arrays, and provider systems. A frequently recurring challenge seems to be the ability to take pilots and single-disease projects to a broader audience, whether that is a new disease, a new population segment, or a different level of engagement that is required. PatientsLikeMe is an online data-sharing research platform founded in 2006 for patients with a single disease, ALS, which now has generalized its platform to encompass more than 1,300 medical conditions from autism to kidney transplants to psoriasis.

In the intervening period (2007-2011), PatientsLikeMe built around a dozen self-contained “vertical” communities, each taking several months each to build. Each of these communities had strengths (specificity, easy to form a group of like individuals, and a feeling of customization), but also weaknesses (focus on the disease rather than the patient, lack of co-morbidity tracking, barriers to patients with non-covered illnesses).

In this talk, the site’s medical architect and R&D director Dr Paul Wicks will share experiences from a scaling perspective, including streamlining of research processes, medical ontology, and business model. Lessons will be shared on the successes and challenges of scaling the platform, with applicability to other practitioners in the field.