About This Initiative
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.
This project interviewed actors working across a range of online health communities to map and explore this new and emerging field. The work, summarised on this micro-site, makes a series of observations about the field and begins to chart out potential ways to develop this new field and accelerate its successful interaction with the NHS and policy makers.
This report is based on meetings and discussions with more than 40 people across the field of digital health communities, augmented this with an extensive literature review. Their insights, experience and generosity underpin everything in this report. But the online worlds that they were speaking from are fluid, emergent, confused.
So this report does not present its findings as ‘research’. Instead it is a series of Barriers, Design Principles and Opportunities, interwoven with observations, proposals and provocations. We hope these will prove to be a starting point for better thinking, more useful experimentation and a useful starting point for deeper research.
It is the identified Barriers and Design Principles that provide the frame for understanding the field. And it is where these intersect that provide the insight needed to generate new strategies and Opportunities to further field field.
Online Health Communities Animation
This animation summarises the research project in about 12 minutes and over five chapters. You can watch the entire animation immediately below. Alternatively you can pick and choose the chapters you want to view, via the menu above, which pick up three of the key findings from the research.