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, which is dealt with here, 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.
There was agreement that getting a more diverse range of people involved was important. The profile of people who get involved tends to be white, middle class, retired people, quite often with some form of health or research background. Having time to get involved, but also a certain level of education and confidence to engage with high-powered scientists, may make involvement easier for such people.
Although Francesco, Peter and Andrew suggested more men needed to get involved, gender balance did not seem to be a major concern for most people we talked to. However, people identified many groups who are less likely to get involved. These included young people and people of working age; people from minority ethnic communities; different faith groups and communities; people of different sexualities; travellers; single parents; people with disabilities; those who have not had a university education; unemployed people and others living on benefits. Practical barriers (such as lack of time, caring responsibilities and costs are part of the problem, but also issues of power and discrimination towards marginalised or excluded groups.
Nadeem would see himself as a representative who happens to come from an ethnic group, rather than an ethnic representative.
It’s fine to involve white, retired, middle class and educated people, but they have a duty to say it’s wrong if they’re the only people involved.
Engage people from lower socio-economic groups by working with people who are already engaging them.
Helen describes sitting on a hospital board and the unequal power relations she sees. It’s hard to persuade the system to be more actively inclusive.
Like Nadeem, Richard argued there was a risk of getting too focused on diversity for its own sake and how to involve people from specific groups, rather than how to improve the research: ‘And that’s fine, and it’s very important, especially when you’re looking at ways of involving groups who aren’t involved already. But ultimately, you involve patients in research to improve the quality of the research and to make that research benefit patients. And I do think there is a danger sometimes that the PPI industry gets lost.’ Margaret commented ‘cancer is a great leveller and that differences between you and other people that might have seemed important before suddenly don’t seem as important as your common shared experience of illness’.
Janice, Rosie and Carolyn pointed out that if our aim is to improve the design and relevance of research, we need to hear the perspectives of people whose health might be the subject of the research but who are less likely to volunteer. Several people commented that they preferred a term like ‘seldom heard’ rather than ‘hard to reach’, because it placed the responsibility on researchers to go out and listen rather than expect people to come to them. At the same time, felt that people have to want to be involved and you cannot force them.
It’s precisely the people who aren’t interested in research that we need to hear from, but that’s not easy.
Rosie describes how getting someone from the traveller community involved in a specific project made it more likely to appeal to other travellers.
We need to find people who are less likely to get involved, but it’s important to treat them equally and not like they’re special cases.
Derek and Dave A pointed out that in the early days of patient involvement there were very few volunteers, who seemed to be trying to do everything. Looking back it seemed to them that there was now a much broader range of people being included, but there was still room for improvement.