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.

Interviewees, who were or had previously been patients, talked about how enlightened clinicians, who gave permission for – or even insisted on – their taking responsibility as critical moments in their empowerment as actors in the world of online health communities. One interviewee talked about how their clinician’s encouragement to be a ‘pain in the arse patient’ was the impetus for their later activism. Permission leads to responsibility, which leads to control and the ability to transform their own, and others, patient-clinician relationships, all of which is stimulated by the development of individual patient’s internal (or intrinsic) motivations. Key characteristics of this shift in internal motivation that interviewees reported included:

  • A voracious appetite for knowledge and information, especially in the early stages of this shift
  • Increased levels of self reporting and engagement with statutory systems and research trials, and
  • People increasingly wanting their experiences to count for something in terms of how statutory services develop.

Internal motivation can be aided, or hindered, by how data / content systems and organisations are designed.

So what might designing for motivation look like?


How data is managed creates, or destroys, value in online health communities. Good design of data management can unlock internal motivations of individuals within communities. Bad data handling by contrast destroys trust quicker than a flash flood. So what principles did interviewees suggest?

Take the minimum personal ID data you need to meet my needs, not the amount you need to make your business model work.

Assume your data will be hacked. Under these circumstances the less information you hold, the better. So how can you make your business model work on the minimum, not the maximum, amount of data about your users?

Be completely upfront about your business model from day one. Be clear about how you generate income and who, if anyone, is profiting either now or in the future. This is especially important if your community relies on resources that flow from users such as peer support, donation of time or data for research, or help I co-designing or monitoring services, for instance if you are running a gift economy.

Interviewee quotes.

Augment the social / close the loop

If you want to build and retain user motivation in the flat, peer-to-peer, adult-adult world in which online communities live and breathe, you must close the loop. You must let your community know ‘what happened as a result of their involvement at every step of the way.

  • Design your community so that it automatically shows what you or a third party did with user contributions. For example here’s Patient Opinion showing who has read your story:

PO screen grab

  • Transparency drives organisational change. Showing what other relevant organisations are or are not doing (as above) can build pressure on busy third parties to up their own game. This motivates both patient and your whole ecology of partners.
  • Start with fulfilment. Design your community from the point at which the user finds out her contribution has been used. Then work backwards from this sense of ‘altruism fulfilled’ to the service you want to deliver to your users. Be explicit about how user’s data has helped others. A good real-world example of this is the Swedish blood transfusion service which tells donors how their blood donation was actually used.

Involve people (including clinicians) in unexpected ways

The core of the Social Age that we are living through is that it offers people new ways with which to engage people with others. Think about how patient led research can recalibrate health scales or the development of wellbeing and in ways that are pertinent to the user / patient. For example, uMotif’s ‘100FP’ app enables people to log seven different aspects of their wellbeing, including their gait and movement with the aim of generating data from 100,000 people. Some will have Parkinson’s Disease whilst the many that do not provide both controls and a motivated set of people interested in Parkinson’s with which uMotif can work in the future. Meanwhile researchers and clinicians get open-access to a unique database of patient and citizen-generated data.


Organisations that are designed to support internal motivation can realise substantial benefits from online communities. Interviewees reported examples where:

  • The open organisational design allowed cohorts of research participants significantly larger than formal, statutorily funded or pharma funded, research trials
  • Peer to peer structures in online health communities generated significant activist communities who have gone on to effect material change in national and international health policy, and
  • The scale and immediacy of online health communities means that patient groups are able to spot changes in patient outcomes months before more formal, statutory systems are able to.

This design principle has the potential to ‘bake in’ the intrinsic motivation that is needed for patients to drive continuous improvement. What is interesting is that all of the above examples are primarily about facilitating trusting relationships, rather than attempting to become expert in the subject matter. Placing participants’ internal motivations centre stage helps reduce transaction costs and increase benefits as each individual’s efforts are harnessed for the benefit of the whole.


Leave a Reply

Your email address will not be published. Required fields are marked *