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.
Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.
Helena feels researchers sometimes use PPI to back up their own views, but will query how representative it is if it disagrees with what they think. It’s vital to be clear how input will be handled.
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’.
People should seek out others’ views and be as representative as they can but without losing their own specific patientness.
It’s dangerous to assume you have a representative view by involving one person. It’s good practice to involve at least two.
No-one expects researchers to represent other researchers. Individuals can’t be representative but they can work hard to find out what a wider group of people thinks.
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.
There are times when you have to present a range of different perspectives, some of which you might disagree with.
Carolyn can’t give the patient view’, but describes how she can help researchers.
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.
Margaret feels what she brings is a unique personal insight into the experience of cancer.
Part of Catherines early training for involvement was about learning to take a wider view beyond your own experience.
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.
Researchers may be worried that someone will bang on about a single issue but Carolyn thinks this is a stereotype and isn’t necessarily accurate.
It doesn’t matter if people are passionate about one particular cause as long as they become part of a wider discussion too.
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.
Kath found it upsetting when things were too close to her own experience. It’s possible to imagine yourself in others’ shoes and still bring a useful lay perspective.
It’s important not only to be able to talk about a specific condition but also what it’s like for different genders or age groups to experience it.
People with long-term conditions have something different to contribute than those who have recovered.
Rosie still has bipolar disorder but hasn’t used services for 8 years. She feels shes in a better place to advise on some aspects of suicide research than someone who is at active risk.
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.
Maggies group comment on all types of cancer. They feel it’s important for someones experience to be recent but not too recent but after a while you get too used to doing it.
Peter never stops feeling like a patient but it comes in bursts. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.
Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.
Elsewhere we explore the issue of ‘Long term involvement and expertise‘ in more detail.