The digital revolution in combination with social media self-evidently undermine the business models of many industries frequently leaving them in tatters. But in our view there are two reasons why online health communities have so far remained resistant to the digital business models sweeping other sectors. Firstly, as we have seen the winner-takes-all, advertising 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.

The move from hierarchy to network undermines the ability for many organisations to realise monetary reward. As costs of technological production fall and digital products become abundant (because the cost of reproduction is effectively zero) existing extrinsically motivated and market based mechanisms are undermined. Or as Paul Mason puts in his recent book[i]: ‘Information goods conflict fundamentally with market mechanisms’. As more and more value escapes into online interactions, so less and less of that value is captured by price, markets and the standard model capitalist economy.

As this process evolves a space for activity that is intrinsically motivated (behaviour motivated by internal rewards), can open up and alongside it the potential to transform the very fabric of our healthcare systems. At one level this is immensely exciting. After all, the motivations of family and carers has always been driven by the economy of the heart and of the hearth. Looking after your dying mother or watching the unfolding drama of your new born child will always be driven – hallelujah – by love, obligation and all the intimacies of being human. Online life informs, records and expands these intimacies in new ways: Mumsnet and YouTube videos of how to breast feed are qualitatively different to Mothercare, Trudy King and the consumerist products and services that came before.

But gift economies are destroyed by money – just try paying your mother-in-law for the meal she has just cooked you. Or as one interviewee said ‘the community fell apart because of the perception that he was making money out of us’. So this is the central business challenge for any digital endeavour driven primarily by internal motivations: if you want an online community that freely gives of its time, then you cannot easily monetise its outputs or seek to make any return on investment. Wikipedia and Linux (and indeed in our research examples, Patient Opinion) show that surviving as a digital gift economy is in principle possible but it is not easy because:

  • Altruistic activity doesn’t always realise, or at least prioritise, financial income and as such may not generate the income needed to sustain itself online.
  • As more patients find what inspires them we see increasing levels of forking (dividing into more specific communities) and commensurate reduction in the critical mass or size often thought as needed to generate the income to sustain online community functionality.
  • Commissioners are unable to comprehend this new world and so cannot commission services that fit with this new and rapidly emerging paradigm.

Our research identified some broad, on the ground, business models that may serve this new reality, where some of the motivations for action are much more aligned to individual desires:

  • Data farming, where volume access to information generated by patients is sold ‘as seen’ and used to generate algorithms, for rapid scenario prototyping, simulation modelling, design of experiments, etc. which in turn generate income
  • Community benefit models which prioritise social or health benefits above financial return and so may be well placed to access subsidies in the form of grants or pro bono goodwill.
  • Research driven, where, for instance, research bodies use online communities to recruit for clinical trials, pharma companies undertake market testing and medical patterns of use research.
  • NHS / Government commissioning, where statutory providers commission to realise the benefits of online communities.
  • Conversion of some online users into donors through membership, crowdfunding and donation.
  • Revenue share models which aim to some of the long-term or inter-disciplinary financial savings back to online communities.

(Thanks to John Loder at Nesta for pointing us in the right direction on this)

However in each of these cases these supposedly forward looking business models are challenged by the tensions between the intrinsic and extrinsic motivations inherent in the development of online health communities:

  • For data farming and predictive algorithms, previous business models, for instance where crowd-sourced data are sold to pharma, may find themselves not trusted, and therefore not contributed to, by the very communities they rely on.
  • Community benefit models may suffer from lack of investment as investors’ expectations of returns are beyond what community models can realistically yield.
  • The demands of evaluation or impact assessment can undermine the dynamics of online communities, for instance where the confidentiality and anonymity needed for trust within an online community is compromised by the needs of evaluation.

‘There was no way people with such a sensitive condition would give the detailed data they needed for their evaluation’. Interviewee describing the challenges of evaluation.

  • Research models may be undermined by both bias (online participants may be atypical) and network effects within communities which may decay the integrity of the control groups and impartiality essential to the research, and as such may act as a brake on resourcing for these models

One interviewee talked about how some RCT trials were being hacked by patients desperate to find cures.

  • Conversion of altruistic activity to donations requires the revenue seeker to negotiate the treacherous journey from gift economy to financial contribution.
  • Online communities represent such a departure from existing NHS functions that any investment can be seen as undermining existing systems and as such cannot be justified.

As we have seen the specificity of individual disease as well as the social limits to group size (where stable and trusted social relationships can be attained) in many cases place limits on the maximum size of viable online health communities. So the traditional way in which economic value is created, with each sale or interaction adding to turnover, (as shown in the diagram below) is inhibited.

value 4 copy

Instead, small close knit groups arise quickly and realise very steep rises in social value. However as Dunbar’s pioneering work on cognitive limits to social groups showed the social value of relationships falls as the number of relationships exceeds our ability to maintain them. The maximum size of group is determined by Dunbar is 150 people – a figure which he recently confirmed holds true for online communities as much as for face to face ones.

We can express this in the following diagram:

value 5 copy

Online communities typically include a large number of ‘lurkers’ who themselves gain social value from watching but not contributing.

value 3 copy

So we can predict that for groups where intimacy needs tend to promote fragmentation (and assuming a ratio of 9 lurkers for every active participant) then:

  • Active membership is unlikely to exceed Dunbar’s number (150)
  • Total membership is unlikely to exceed Dunbar’s Number x 10 (1500) (or perhaps double this taking in to account the reported low numbers of active participants in online health communities).

Within this frame it is possible to see how:

  • The needs of online gift economies are not easily squared with the needs of venture capitalists or indeed of employees simply wanting a secure salary
  • Existing financial and business models at best constrain and at worst disable online communities, and
  • To the extent that online health communities require similar levels of intimacy to those afforded by face to face communities they will fail to scale. Communities that tend to fragment in order to retain intimacy and so are unlikely to deliver the scaling required by many business models.



[i] Post Capitalism: a guide to our future’ Paul Mason Penguin 2015 P30

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