Introduction

We 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.

Approach

The 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.

Barriers

The research identified six distinct barriers:

  • Technology as a Leveller

As the cost of technology plummets the benefits of this accrue to individuals faster than they do to organisations. In aggregate, UK citizens are investing in their IT kit ten times faster than the NHS. It’s not just the economics that favour the citizen but the distributed and non-hierarchical nature of the network architecture as well.

  • Finance and Business Models Constrain

The digital revolution in combination with social media self-evidently undermine the business models of many industries frequently leaving them in tatters. But there are two reasons why online health communities have so far remained resistant to the digital business models sweeping other sectors. Firstly the winner-takes-all model of Facebook does not apply to online health communities where the ability to scale is profoundly disabling to the needs of communities. Secondly the gift economies that underpin online communities are inherently antithetical to the culture of profit-seeking digital start-ups.

  • Objective Truth Rules

In much of the modern world, objective truth rules. Objective truth is not swayed by the vagaries of subjective experience, preference, emotion and interpretation. Certainty prevails and we all know where we stand in relation to the world around us. Objective truth is central to the medical model of care. The system requires clinical outcomes over social outcomes, success over failure and clarity over confusion, all driving us inexorably towards a truth that is independent of human experience, networks (or Assemblages, as previously discussed) or bias. Medically we elevate causation over correlation.

Not so in the messy world of online communities. Social outcomes sit alongside, sometimes higher, than clinical ones. Failure can be prized as much as success as in an information rich environment all experience contributes to learning.

The result of these two different models is usually mutual incomprehension and mistrust.

  • Scale is a Bug not a Feature

Anyone building an online health community or a health app dreams of scale, of going viral, of (in some cases) making a shedload of money. No matter that 85% of apps aren’t opened after the first six weeks or that there have been at least 42 different platforms for rating residential care homes in the UK. The dreams of the digirati are fed by the existence of a very few winner-takes-all apex Unicorns and by the normative behaviour of digital entrepreneurs and investors that flows from their success.

When we began this research we too assumed that online communities could and should scale to be massive and involve millions. But what we learnt from interviewees and from surveying progress across the field was that for online health communities scale is a bug not a feature.

  • Governance Reimagined, Governance Unwound

There is a deep asymmetry between the demands on the NHS and the demands on patients in the areas of governance, procurement and regulation.

Governance is hard – but only for the NHS. For citizens it is a doddle. Who cares how I use my Fitbit? Procurement is a nightmare for the NHS. For citizens it is a consumer experience and a trip to the Apple store. Regulation is a knotted mass of conflicting accountabilities for the NHS. For citizens it is just part of the terms and conditions and who cares about them?

So anyone in the online health world seeking to engage with the NHS will tend to be drawn inexorably into the tangled thickets of governance, procurement and regulation, and in this way their attempts to create governance structures that are fit for online communities will be unwound.

  • Online Identity Crisis

Finding an online community can be transformative for patients. No more isolation, people who really understand there for you 24/7, information, advice. So why is that, still today, 70% of patients with a long term condition (LTC) have not talked with anyone with the same condition?

Creating and inhabiting an online identity is not straightforward. Getting online can be technically difficult and once there anxieties abound. Revealing your condition online may also have wider implications for employment, or for relatives.

For staff the dilemmas are even worse. How do I keep appropriate boundaries? Will my professional body disapprove? Will I be overwhelmed by patient demands? Most online health communities do not afford the functionality needed for these different levels of privacy, sharing, personal data, or information gathering or giving.

Design Principles

The research identified five distinct design principles:

  • Inspired Individuals, Within Patient Communities, are Essential

Inspired individuals are central to the successful development of online health communities. Without them online health communities are at best deprived of the oxygen needed for their development and at worst destined to fail. Equally, without these individuals’ activities being deeply entwined with, and built on, wider patient communities these activities rarely gain traction.

  • Build Honest Brokers

Effective dialogue demands trust between the key participants. Although relationships in health are typically more trusting than in many fields the research identified that honest brokers are one way to curate the required levels of trust building up in online healthcare communities.

  • Design for Internal Motivation

People want their experiences to matter. When offered responsibility, people, more often than not, respond by stepping up and taking it. If engaged in things that they are intrinsically motivated by, people’s performance is proven, time and again, to outstrip their performance when they are extrinsically motivated, especially when engaged in cognitive, rather than manual, tasks.

  • Build Architecture for Emergence

The architecture of online community sites is – self-evidently – important. But building for emergence goes far beyond getting the ‘UX’ (user experience) right. Online health communities need architectures that fosters the emergence of trustful relationships, and so communities, for both users and organisations.

Opportunities

By exploring how barriers and design principles interact, both hypothetically and in the work of interviewees, we gained a series of insights in how the field may be able to move forward. We selected the four most notable opportunities for discussion:

  • Encourage Deep Pluralism

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, encouragement of technical architectures that support the diversity of needs, solutions that accommodate the implications of different diseases and the needs of carers as well as patients, and building many small steps by which patients, clinicians and systems can engage with online communities.

This approach will allow actors to, as one interviewee described, “put the variation back in and ensure a deep pluralism develops” and so enable the personalised, user centred and diversified environment that is necessary for online health communities to reach their potential.

  • Meta Capital Not Venture Capital

Venture capital is configured to support initially small, focused interventions to scale rapidly and in doing so deliver a financial return within expected venture capital ranges. Such an approach runs counter to the wider needs of the digital healthcare world, which needs to foster intrinsic motivation. This means that the current money coming into online healthcare is ill-configured. The reality is that significant funding is needed to develop the field in ways that deliver financial returns that don’t turn the heads of the VCs.

  • Clustered Scaling

The default position across the digital world is to aim for scale, with the apex predator being the monopolistic unicorn organisation. Success in the world of online healthcare appears to require the opposite: a myriad of small entities who differentiate themselves through their granular expertise or focus and where a winner takes all outcome would mean that everyone loses. So supporting organisations in moving from thinking that scaling is a feature to realising it is, in the main part, a bug is key to the sector’s development.

The idea of clustered scaling emerged from the research to describe the shape that scaling takes when online communities fork and fragment in order to preserve their internal intimacy. The hypothesis begins to offer organisations a way to strategise and develop successful online health communities.

  • Changing the Change Story

The way the NHS envisages change – KPIs, financial incentives, quasi-markets, the judicious use of sticks and carrots – does not work in the new online world. The NHS needs new ‘change stories’ – new metaphors and rationales that we tell each other about how and why change should happen. We identified three possible candidates (‘entanglement’, ‘contaminated diversity’ and the ‘eco-evo- devo’ revolution in biology) that provide useful ways to model change in the online world. All three focus on how change in complex system is always about ‘becoming together’.

Next Steps

We anticipate the research being used in a number of ways, shaped by future iterations with most to benefit from it. Possible next steps we’ve identified through conversations with interviewees and other stakeholders include:

  • Events and workshops supporting networks and organisations to reflect on, and apply, the findings
  • A “Dragon’s Den” for online health communities that are in need of funding
  • Consultancy to individual organisations
  • A series of papers, perhaps leading to an academic, or otherwise, conference, and
  • A staff college, serving patient organisations and the NHS.

We look forward to exploring these, and other, ideas with you and in so doing shaping the world of online health communities to meet the needs of patients and clinicians alike.

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