The architecture of online community sites is – self-evidently – important. But building for emergence goes far beyond getting the ‘UX’ (user experience) right. As we have noted, ‘technology proposes the architecture of our intimacies’ and our research has shown that we need architectures that fosters the emergence of trustful relationships, and so communities, for both users and organisations.

For users this includes designing for the particular nature of the disease; awareness that the user needs change as the condition trajectory is traversed; understanding that engagement – and hence communities – emerge via multiple small ‘engagement’ steps; and that it is smallness not scale that builds intimacy and trust, so design needs to facilitate the forking by which users to manage the push/pull tensions of online community life.

For organisations, emergence is built by ensuring the architecture balances legitimate organisational concerns such as fears about reputation, governance and staff wellbeing against the strong – and self-destructive – organisational impulse to take control. This usually involves significant off-line work and resources. All too often interviewees reported that CEOs would sign up to some aspect of online communities leaving the fears of those who had to do the work unresolved.

But the architecture of your community also needs to take the architecture of the network within which you are working into account. An organisation like Health Unlocked not only needs to host multiple communities, it also needs to engage with customers like NHS England, CCGs and patient organisations. Communities focussed on clinical services or a research trial are often ‘dumbbell’ shaped consisting of a clinical community of practice and a community of solidarity focussed on the patient.

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Architectural decisions about how much of the ‘social information’ (who is participating, who is lurking, who is contributing etc.) to make visible and to which participants are powerful determinants of outcome[1]. Such decisions also make the values of the site owners much more visible to participants. This, together with the business model employed, has significant spill over into designing for internal motivation.

Our interviews identified a number of possible sweet spots where online communities may have particular relevance:

  • Medical research. There is clearly appetite and early work going on to use online communities to increase recruitment to research. Less attention has been paid to the how online relationships could maintain motivation and retention
  • Combining the ‘health app’ market to build communities whilst generating data that clinicians value. Patients Like Me and uMotif were interviewees already well embarked on this road
  • Engaging through youth. Interviewees reported people feeling less inhibited when communicating with youth about health problems, and
  • Another area rich with potential for engagement with online health communities is around conditions where there are high levels of clinician – patient interaction as patient’s levels of learning and involvement are good indicators of potential online engagement.

 

Correctly configured technology is also an essential architectural prerequisite for successful online health communities. Observations from interviews here include:

  • Using bespoke technology development platforms, such as Ginsberg.io and Apple’s ResearchKit and CareKit are needed so that communities can build the online functionality that they want, rather than those an investor or clinician perceives is needed
  • Making maximum use of Application Programming Interfaces (APIs) to ensure interoperability between online health communities, so that users can navigate between communities, and
  • Data management structures best serve online health communities when they are both anchored in individual ownership and in ways that allow patient records / profiles to be transferred in their entirety. Common across appropriate technological architecture are characteristics that allow for usability and functionality to emerge over the course of use, where the affordance of the tech is emergent.

Interviewees provided contradictory views and experiences as to whether success for online health communities is best realised by working from within existing NHS infrastructure or by establishing architecture that is independent of the NHS, but that which (may) begin to engage with the NHS once established. Views were pretty much split evenly between “rock the boat from the inside”, “build a tank then park on the NHS’s lawn” and “just ignore it altogether”.

Regardless of approach what united successful initiatives was a detailed analysis of the environment in which they operated and a purposeful approach, whichever of the above approaches were selected, in response to the external realities.

 

[1] Political turbulence. How social media shape collective action Margetts H, John P, Hale S, Yasseri T. Princeton University Press 2016 P114

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