Scale: Over 250,000 members
When a system of care fails a patient, it is vital that the failure is reviewed and progress made. However, changing systems and driving progress requires evidence and consensus. User-led and data-driven, PatientsLikeMe is an online platform and support network for people to share their patient data to help speed up the pace of research and understand better ways of caring and coping.
The site has fostered a community of a quarter of a million patients and carers, pooling information, both data and anecdotal, in order to understand their day-to-day lives in a broader, communal context.
PatientsLikeMe only work with accredited partners in this mission, and believe that transparency is key to building and keeping trust when dealing with such sensitive information.