Innovative Organizations - 2012

PatientsLikeMe was founded by brothers who became frustrated with the lack of networking sites for patients as they began their own research for their brother who was diagnosed with ALS (Lou Gehrig’s disease).

Using their brother’s experience as inspiration, the co-founders built a health data-sharing platform that can transform care for patients by aligning the patient and industry interests through data-sharing partnerships.

PatientsLikeMe follows four core values that include:

  • putting patients first
  • promoting transparency
  • fostering openness
  • creating “wow.”

The company, founded in 2004 in Cambridge Massachusetts, was the world’s first health data-sharing Web site. It is a free online community where patients can connect with each other to better understand their diseases, share condition and treatment information, and get the support they need to improve their health. About 160,000 patients currently use the site, covering 1,000 different diseases, everything from ALS to Parkinson’s to psoriasis.

PatientsLikeMe is also a research-based platform; as patients report on their disease experiences, they provide real-world, real-time insight into the need for and efficacy of treatments. Those insights are shared with others, including healthcare companies who use the patient’s experiences, insight to continuously develop more effective treatments. PatiensLikeMe’s open, community-driven approach to healthcare research delivers broader insights, faster. It also amplifies the patient voice in their own care, within the industry and in the policy arena.

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