Patient and public involvement in research

Representing a range of views and experiences: being representative

A key debate in patient involvement is how far people who get involved represent others. There are two main elements to this debate: one is about the diversity of the people who get involved, and the other is about how far we can or should expect any individual who gets involved to be ‘representative’ of other patients’ or carers’ views, which is discussed here. 

What do we mean by ‘representative’?

A major reason for wanting more diversity among the people who get involved is that we want them to reflect the population of the country as a whole or everyone with a particular condition. But most committees or funding panels will only ever include a small number of people; expecting every committee to fully reflect the entire population is unrealistic. In quantitative research (involving statistics), ‘being representative’ means results are only valid if the numbers are large enough to be considered representative of the population. Some researchers may therefore feel uncomfortable listening to the advice from a few individuals and see involvement as scientifically ‘unrepresentative’. 

This goes back to the question of what patient and public involvement is for. It is there to provide a different perspective, a different kind of expertise, and to help researchers see through the patient’s eyes. It is not evidence of what all patients think. Undoubtedly there will be times when patients and members of the public offer conflicting views or priorities. But this is no different to any other disagreement between research team members, and it will be the lead researcher’s job to take a view on the way forward after listening to everyone.
People were somewhat divided in their opinion about representing the views of others. Some felt they could and others felt they couldn’t. But as Derek and Kath pointed out, how representative professionals (researchers and clinicians) are is never questioned. Comments such as ‘I can’t speak for all patients’, ‘I’m not elected to represent all patients’, and ‘I’m just providing a perspective’ were common. Richard said, ‘My personal view of being a patient representative is that I am there to represent “a” patient's point of view, which happens to be mine. It's the only view I can fairly represent.’ He made a distinction between being ‘a patient representative’ rather than ‘a representative patient’.
As these comments suggest, there was a widely held view that your contribution was stronger if it was grounded in views and perspectives gathered from a wider range of groups and individuals. Carolyn and Dave A said it was important to resist pressure to give ‘the’ patient view and instead show the range of opinion – and this might mean presenting views you don’t agree with.
But there was some disagreement about how far it was necessary to gather a range of views to be effective. The power of a single insightful experience could be enough to change the debate, as Margaret suggested. Hazel said involvement doesn’t work if you bring people in ‘for their ability to represent large numbers of people without any kind of detail’ rather than for their individual ‘patient expertise’. Tom agreed that ‘It's your opinion and your views we want, not a group view.’ But others felt strongly that it was important to try to be more ‘objective’ and either suppress your own experience or use it sparingly, working hard to think yourself into other people’s shoes too. There is no right answer to this question; it will depend on whether a study needs insight into the lived experience of a condition, or rather some lay challenge in discussions – or both.
People worried about involving patients who ‘have a hobby horse’, ‘bang a drum’ or ‘have an axe to grind’. Carolyn recognised that this was a real concern but felt it was often misplaced and Derek also took a more relaxed view.
A related issue is how far people can get involved in studies as lay people even when they don’t have directly relevant personal experience, or when their experience was some time ago. Can a person with one form of cancer comment on another type? Can they comment on a heart disease study or a mental health study? Can a carer or parent speak for people with a condition? What can a healthy person bring to a research study? Are there common issues across different long term conditions? The answers to these questions will depend largely on the nature of each research project; sometimes direct personal experience of a particular symptom or treatment may be essential, but in other cases a more general patient, carer or lay perspective may be enough.
Like Rosie, Tom and Maggie felt a bit of distance from your own personal experience could be a positive help. Maggie suggested there were limits to how long your involvement could continue. Peter felt he was sometimes more or less aware of being a patient depending on his health. But Tom felt in some ways people with more remote experience could offer different things of equal value. Rosie commented that ‘having a serious mental illness has changed my identity, it's changed my life’, so she would always be able to contribute that experience.
Elsewhere we explore the issue of ‘Long term involvement and expertise’ in more detail.

Last reviewed July 2017.


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