Patient and public involvement in research

Long-term involvement and expertise

Elsewhere we discuss how enjoyable and rewarding research involvement can be, and how some people spend many years contributing to a range of projects. As a result they often felt they became more effective at doing it – but also wondered if they were losing the freshness of their perspective and becoming too familiar with research. This is an important tension in involvement, which generates some strong feelings on both sides of the debate. One way to overcome this is to find different ways for people to contribute over time (see also below).

In the beginning when people first got involved they often didn’t really know what to expect. Being in a room full of professionals, who expect you to speak up and give your opinion, could feel daunting. But people were aware they were bringing something to the table that the professionals didn’t have; their personal experience of illness or using the NHS. In addition, they might also bring other skills they had developed in other aspects of their life. Looking back, they were often surprised by what they’d achieved and were doing things they’d never dreamt they’d do.
Over time, people felt they developed a greater understanding of research and knowledge about health. They also gained new skills, from attending training, working with professionals and through their experience of various involvement activities. By being immersed in research in this way, people often began to use the same language researchers used, language they perhaps didn’t understand in the beginning. They felt they had to be careful not to become too much like the researchers and still able to think like patients.
Becoming ‘too expert’ in involvement to think about research from a patient’s point of view was a concern for some. They worried it meant their perspectives may not be fresh or that they would miss issues that patients with more recent experiences would notice. As Helen said, ‘I’m beginning to – this sounds silly – I’m beginning to feel over-qualified to be a lay person. I’m beginning to lose my lay perspective’. Dave X felt there was a point when people could become too expert, but he said, ‘I hope I don’t reach it’.
To guard against this, one suggestion was to refresh committees regularly with new people, especially those with more recent illness experiences. But it was also argued that it’s more important to have the right person on the committee than a new person. Dave A was replaced after five years, but said, ‘I felt I still had something to contribute and had they not been able to replace me in a sensible way then I would have felt really aggrieved.’ 

Others, however, thought long-term involvement and gaining expertise made them more effective at contributing rather than less effective. Roger B argued that being involved for a long time and gaining new skills didn’t mean you had to lose your ‘own specific patientness’, especially if you keep links with other patients to keep your views relevant.
One argument that is often heard around long-term involvement is that people become too ‘tame’ or ‘domesticated’ as Rosie called it. They become so familiar with research and researchers that they can no longer be critical and challenging. An alternative view is that the longer you are involved and the more skills and expertise you gain the better you are able to challenge. Tom had cancer twenty years ago and said, ‘In some situations you’ve probably got more to offer maybe because [you’ve] had all this time to reflect and think about things differently.’ It sometimes felt to people as if they couldn’t win; either researchers said they couldn’t be involved because they didn’t know enough about research, or they couldn’t be involved because they knew too much about research and were therefore no longer able to bring a really lay perspective (see also ‘Training and learning’). Dave G felt the idea that he was a ‘professional patient’ was ‘an insult’. Helena, who had done a PhD in her condition, felt frustrated that research colleagues now dismissed her as not ‘naïve’ enough to bring a patient view. Catherine argued that she could never cross the line and be on the same side as professionals. Like others, she felt she was unable (and unwilling) to forget important life-changing moments from her past experiences.
The thought of no longer being able to be involved because they had become ‘too expert’ saddened people. They felt strongly that there should be some way to keep people involved in the long term and benefit from the skills and experience they had gained, but perhaps move them into different roles rather than losing them altogether, which seemed wasteful. Dave A described this as the ‘conveyor belt of involvement’. This could be by taking on more national or strategic roles (for example national committee work, advising research councils and the National Institute for Health Research), mentoring new people and running training courses for both researchers and people starting out on involvement. But some people wanted to reduce the amount of time they spent in research, which would lead to opportunities for others to get involved.
Changing roles over time were a common experience for people who had been involved longer term. Roger B said his role was more strategic now than when he started. Kath initially reviewed funding proposals, but then began to do some community outreach work to train people in understanding research methods. Being involved for a long time led to new career opportunities for some people. Kath and Rosie were doing PhDs in involvement, and Helen had begun to work in patient and public involvement and engagement. But, as Kath pointed out, people don’t have to develop careers or even commit a great deal of time to research. They can dip in and out of it as they choose. Helena, who had already completed a PhD in her condition, pointed out that sometimes the research world is not sure how to treat user-researchers. Straddling different worlds sometimes felt quite powerful but could also feel very uncomfortable.

Last reviewed July 2017.
Last updated March 2016


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