Effective dialogue demands trust between the key participants. Although relationships in health are typically more trusting than in many fields the research identified strong drivers that can prevent the required levels of trust building up in online healthcare communities. At the level of the individual clinical interaction, as explained in the Barriers section of this report, these include:

  • The archetypal relationship in health care is parent-child where staff have most of the power and patients hold most of the vulnerability
  • The adult-adult relationships of the web can threaten the mechanisms by which staff contain their own anxieties and can challenge patients when they step outside of this parent-child dynamic into a more adult role
  • This is exacerbated by context collapse as the web lays bare all kinds of personal and professional information about staff (and patients) that previously was hidden.

For healthcare organisations trust is diluted by the shift of power to patients that the web brings: having a public voice, banding together to campaign, Twitter storms etc.

Informal online patient groups, fora, and patient organisations are at risk of depleting mutual trust in other ways:

  • Patients interests are diverse and their needs for intimacy and privacy high. Consequently, there is a high degree of ‘forking’(dividing into more specific communities) leading to clustered scaling rather than classic scaling
  • Patients – like everyone one the web – tend to distrust platforms owned by interested parties. This means that power is disabling: it is precisely because of the real power that hospital trusts, the NHS England or even national patient organisations exert that prevents them from building authentic online health communities
  • Inappropriate business models – for example selling data or even simple advertising – can inadvertently destroy the gift economy of contributions.

Principles required to design a successful honest broker in online health settings

Trying to create an ‘honest broker’ was a common design solution attempted by many of our exemplar organisations (Patient Opinion, Patients Like Me, IBD Relief, Health Unlocked, Shine Cancer Support). Being an honest broker is more likely to be seen as an explicit aim by organisations that sit between patients and health services than it is in pure patient support groups. Key characteristics of honest broker organisations identified by interviewees during the research include:

  • Independence. Obvious but immensely important. Dimensions of independence for honest brokers are:
    • Legal structure and ownership – who owns the platform, and its IP, and whether the legal structure reflects the principles of the organisation
    • Governance – how the platform or group is controlled
    • Financial – how income is generated in ways that reinforce independence
  • Transparency. Whether all of the above obvious to any casual visitor to the site
  • Values. There needs to be a significant and reasonably symmetrical overlap of values across the key stakeholders of patients, staff and honest broker
  • Honesty. Values need to be lived by the honest broker if they are to be believed by stakeholders. Fine words are not enough. Instead trust is won inch by inch every day through the broker’s numerous interactions on- and off-line, and
  • Money. Honest brokers are serious about money but not driven by it. They need to pay the bills but they also need to be financially independent of funders.

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More importantly values need to be lived by the honest broker to be believed by stakeholders. Fine words are not enough. Instead trust is won inch by inch every day through the broker’s numerous interactions and online actions

A successful honest broker will always be managing an unstable ‘tri-lemma’:

trilemma

Money is essential for an organisation to survive and thrive. Values are essential if an organisation is to remain true to its mission. Trust is essential if an organisation is to win the support of the patient community and be successful in serving this community. Finding a balance between these three factors will always require trading off benefits and compromising in some way across all three. For instance,  witness the numerous patient fora with no visible means of financial support (values and trust benefitting at the expense of money), or the way that for-profits like Patients Like Me are sometimes attacked for selling patient data (money benefiting at the expense of trust), both of which are examples of how one aspect of this trilemma influences the others.

In addition ‘obvious’ business solutions derived from other, for-profit, sectors are often contra-indicated if the internal motivations of online participants (patients and staff) are to be maintained.

Potential benefits and risks of having an honest broker

Organisations acting as honest brokers have the potential to capture more social value than those acting with other motivations as they are more conducive to benefiting from the discretionary efforts of patients and staff (both originating content and comment, and third party policing of comments and overall quality).

Honest broker organisations also benefit from being loosely coupled, that is – as explained earlier – system relationships are not immediately and highly dependent on each other, and so are much more tolerant of failure and of containing multiple conflicting opinions and information. As a result they are capable of handling political or ‘hot potato’ issues better than systems in the statutory health service.

This honest broker role can also potentially bring benefits as the broker gains authority as a knowledgeable but relatively disinterested party, which leads to new sources of social value.

On the down side honest brokers can suffer significant problems:

  • If they choose to be ‘not-for-profit’ then they lock themselves out of capital markets and have to finance growth mostly out of revenue
  • If they choose to be ‘for-profit’ they risk blowing the trust needed to sustain peer-to-peer motivations, and
  • The NHS spends £120 billion per year and ultimately this is where the income of most honest brokers arises. But turning to face this money is risky:
    • Dealing with the NHS’s tangled web is notoriously time consuming
    • The NHS’s legendary need for governance can easily smother small organisations whilst its tendency to control things can destroy the very values – like independence – that are essential to success

That all these risks focus on the business model is no accident. Honest brokers are trying to do something rarely done before – manage a digital gift economy, at scale, on behalf of others. This is a very 21st century task with few road maps and much yet to be learnt. Finding new business models that manage the trust/money/values trilemma – see meta-capital solutions – is perhaps the single most urgent task if we are to be able to fully utilise the tremendous potential of online health communities.

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