edge talk - exploring online health communities, with paul hodgkin and ben metz
TRANSCRIPT
ExploringOnlineHealth Communities
Paul Hodgkin and Ben MetzEdge Talk | 2nd June 2016
IntroductionWe are witnessing the emergence of a new phenomenon in healthcare: self-organising, online communities composed variously 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, they are having a substantial and increasing impact on healthcare in the UK and across the world.
ApproachThe research focused on interviews with over 70 individuals pioneering in the field of online health communities to discover the world through their eyes.
This was augmented by a review of relevant literature, drawn from an array of sources.
Analysis of the interviews and literature categorised data into barriers and design principles.
We used a form of Grounded Theory Methodology to map the multi-faceted nature of the problem and how its different components might be overcome.
The research can be read here.
Barriers
TechnologyDigital technologies are empowering citizens faster than organisations.
➔ Hierarchical power is disabling.➔ Context collapse.➔ From parent-child to adult-adult
healthcare.
Read more here.
BusinessManaging the trust/values/money trilemma is key to sustainable communities.
➔ How can we square the need to make a return on investment with the altruism of online gift economy communities?
➔ Intimacy is inversely related to community size. What business models thrive on community forking?
Read more here.
TruthThe medical model and the NHS both promote a worldview that there is an objective truth that can be applied through NICE guidelines, care pathways and hard as opposed to soft evidence.
Online health communities are woven from anecdote, gossip, anxiety, truth-telling and sharing.
➔ Are the truths told by these two ways of knowing worth reconciling?
➔ Does Big Data hold a way to sum patient experience over many thousands of people in ways that are ‘objective’ enough to satisfy the NHS?
Read more here.
ScaleOnline health communities exhibit ‘clustered scaling’. Forking and community fragmentation allows people to follow their interest and retain intimacy.
➔ How can organisations access the benefits of
clustered scaling?
Read more here.
GovernanceThere is a deep asymmetry between the demands on the NHS and the demands on patients in the areas of governance, procurement and regulation.
➔ How can we manage the competing tensions of citizen and NHS around:◆ Governance◆ Procurement, and◆ Regulation?
Read more here.
Identity➔ Both patients and staff have difficulty
managing online boundaries.
➔ Online life encourages the presentation of multiple aspects of the self.
➔ Social media collapses context – you can see your cardiologists Facebook and vice versa.
Read more here.
Design Principles
InspirationInspired individuals are essential.
They lie at the core of most online communities.➔ How do we best identify and support such
individuals?
➔ How do we help them find business models that sustain them rather than driving them to burn-out?
➔ What could the NHS do to facilitate inspired patients? And inspired clinicians?
Read more here.
Honesty➔ Build honest brokers.
➔ How can honest brokers manage this unstable trilemma?
Read more here.
MotivationDesign for internal motivation.
Internal motivation is fueled by autonomy and meaning.➔ How can online health communities routinely
give their users a sense of ‘altruism fulfilled’ - that their contribution has been useful?
➔ What forms of governance around data will help online communities flourish?
Read more here.
EmergenceBuild architecture that promotes emergence:
➔ How do you ‘bake in’ trust?
➔ How do you promote community forking and protect intimacy?
➔ How many ways can you help users go from scalable to community and back again?
➔ How do you ‘close the loop’ and show users and stakeholders what effect they are having?
➔ How could you use ResearchKit, CareKit, Ginsberg.io and other platforms?
Read more here.
Opportunities
Bringing it Together(Well, some of it)
➔ What might take the user from the scalable transactional site to the emotional online community? What might take her back again?
➔ What might your other stakeholders – researchers, CCGs, clinicians, policy – take from this?
PluralismWe need to actively foster pluralism across a number of dimensions including:
● Business models
● Technical architectures
● Design solutions that accommodate difference
We can do this in a range of ways, including but not limited to building clinician capacity and encouraging off line interaction.
Small steps by which patients, clinicians and systems can engage with online communities are seen as crucial to developing new forms of democracy.
Read more here.
FinancingMeta Capital not Venture Capital.
Unicorn-seeking venture capital conflicts with the meaning-seeking, altruistic economies of online health communities. Meta capital is capital that seeks to build the ‘meta’ infrastructure that is needed to progress this sector. Meta-capital might focus on developing business models, interoperability, off the shelf governance, platforms etc. ➔ What key sector-wide, meta-level infrastructure or
agreements are needed to further this sector?
➔ What is the compelling investment case for each?
Read more here.
Changing ChangeChanging the change story.
The management tools that the NHS uses to manage change - KPIs, financial incentives, quasi-markets, sticks and carrots – simply don’t work for online communities.
➔ We need new change stories – new metaphors and understandings – to help big hierarchical organisations co-evolve with the chaotic, peer-to-peer world of online communities. What might these be?
Read more here.
