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We are witnessing the emergence of a new phenomenon in healthcare: self-organising, online communities of patients, carers, clinicians, researchers, academics and industry, all focused on a particular disease area.
Currently these exist as disparate and loosely bound communities, operating via a variety of niche digital platforms. This ecology is largely evolving outside the world of traditional health policy or formal healthcare organisations.
As yet there is little coordination, theoretical conceptualisation or empirical research into this area. However we know from other digital platforms like KickStarter, 38 Degrees and OpenIDEO just how quickly these platforms can evolve, disrupt old business models and create entirely new businesses.
Paul Hodgkin and Ben Metz interviewed more than 50 actors working with online health communities to map and explore this new and emerging field, to begin to build an on-going community of experts and practitioners who look to understand this new field and accelerate its successful interaction with the NHS and policy makers.