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.

Interested in this emerging field Paul Hodgkin and Ben Metz secured funding from the Health Foundation and the Guy’s and St Thomas’ Charity to interview actors working with online health communities to map and explore this new and emerging field. The purpose of the research was to understand this new field and accelerate its successful interaction with the NHS, other key stakeholders and policy makers.

We intended the outcomes from this work to be:

  • An increased understanding of the field
  • The identification of an overarching conceptual framework through which we may all make better sense of the field
  • The identification of what needs to happen next to move the field forwards, and
  • Most importantly a community or network of individuals and organisations active in this space who are beginning to be “entangled” with each other, where they are finding mutual benefit.

This website attempts to address the first three of these intentions. The fourth is up to us as to how we want to move forward and shape any emerging community.

The research

To explore the field, we interviewed over 70 individuals pioneering in the field of online health communities to discover the world through their eyes. The insights here reflect their understanding of the challenges they face, as well as the vision they hold for what is possible.

We posed a central question for interviews: “Online communities are emerging as a new phenomenon in healthcare: self-organising, communities of patients, carers, clinicians, researchers, academics, and industry all focused on a particular disease area. How can we understand this new field and accelerate its successful interaction with the NHS and policy makers?”

Our approach has been to listen deeply, and turn the wisdom of those who are closest to a problem into new and never-considered ways to take collective action. This is not a report or a static website. It is a call to action from those leading the way in the sector who are ready to step into their true potential.

The views, analyses, conclusions, and recommendations expressed in this report are solely those of the authors and of individuals interviewed, and do not represent those of any individual or organisation listed in this document.

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