Given the range of problems faced by online health communities a key need is to actively foster pluralism across a number of dimensions including:
- A diversity of business models in order to maximise the chances of finding solutions to the trust/values/money trilemma
- Encouragement of technical architectures that support forking, as explained in the Barriers section, so that we learn how to cater to the diversity of need and interest necessary for online communities to properly serve users
- Designing solutions that accommodate the implications of different diseases and the needs of carers as well as patients
- Building many small steps by which patients, clinicians and systems can engage with online communities. (In the world of online politics analogous ‘tiny acts of political participation’ are seen as crucial to developing new forms of democracy[i]
Building to, as one interviewee described, “put the variation back in and ensure a deep pluralism develops” will enable the personalised, user centred and diversified environment that is necessary for online health communities to reach their potential.
Build Clinician Capacity
While many online health communities intrinsically focus on building the capacity of patients and lay people, focusing on building the capacity of clinicians and other medical professionals to engage with online communities is probably key to maximising the potential of these emerging communities. To do this we are likely to need clinicians who:
- Are already comfortable with the peer-to-peer nature of the emerging world
- Are passionate about what the new online communities could offer them in terms of research, better care and deeper understandings of medicine
- May have suffered serious illness themselves, and
- Are supported to lead their teams in new forms of engagement.
The Cochrane Collaboration offers an encouraging template about how such a community of enthusiastic clinicians can be identified and supported to harness internal motivation in the services of a (successful) world-wide revolution in medical care. A similar collaboration (perhaps the Kate Granger Collaboration) would aim to develop adult-adult forms of caring as a default.
Interviewees identified some way stations along this road:
- Clear personal-professional boundaries exist and are evident to all parties, even where both personal and professional information is in the public realm (for instance where an online health community links to Facebook, Twitter, to draw profile information across)
- The potential for clinicians to post anonymously is available
- Enough time for clinicians to engage online and in related learning, and
- That clinicians see real benefit to engaging with online health communities because of their intrinsic worth.
Clinician to clinician networks were listed as excellent ways to build clinician capacity, while simultaneously facilitating improved clinician knowledge and working. And what some interviewees identified as ‘edge networks’ (networks that facilitate answers to issues at the edge of a clinician’s knowledge) were reported by interviewees as useful for clinicians to gain knowledge and expertise from expert patients as well as other clinicians with relevant expertise. This increased clinical capacity to engage online builds plurality as each new medical expert engages meaningfully online.
Value Offline Interaction
In an age of digital connectedness, interviewees reported that nothing beats face-to-face working: investing in people. Creating opportunities for people to come together helps build relationships and fosters the cooperation and partnerships that ensure online communities are able to grow and succeed. It may seem obvious, and it’s certainly the briefest of write ups, but it’s something that is often overlooked. Getting people offline to cement their online relationships, and so anchoring digital in the real world is an important building block for online health communities and a powerful way to cement interaction at an individual, granular, and therefore pluralist, level.
[i] Political Turbulence. How social media shape collective action Margetts H, Peter J, Hale S, Yasseri T. Princeton University Press 2016