Researchers' experiences of patient & public involvement

Finding people to involve in research

A common concern for researchers, especially those with less experience of involvement, was how to go about finding people to involve and how formal the process should be. Researchers whose work combined a clinical and a research role sometimes felt they had easier access to a pool of people than non-clinical researchers. This might include existing patients or research participants who are invited to get involved more formally, but also informally using the opportunity of a clinic to gather some perspectives. Adam described PPI as ‘A very small step from what I do clinically anyway’, and Carl said, ‘Throughout my clinical training I've always involved patients, so the idea I didn’t is nonsense…. I think in some ways, if you're a clinician, it's much easier to say you're involving patients all the time.’ But Fiona pointed out time in clinic is limited and Pam felt people can raise different issues in a PPI forum.
Both Fiona and Adam reflected a common worry amongst researchers: the extent to which people who get involved are either self-selected or recruited through personal contacts. Using newspaper and social media advertising to widen awareness of involvement opportunities was suggested, but researchers often had reservations about formal selection processes such as asking for a CV, setting selection ‘criteria’ and interviewing because this might alter the basic premise that anyone can get involved, and reinforce researcher control over who is ‘allowed’ to get involved. But there were also concerns about ‘professionalisation’ and whether after a time people might become too ‘expert’ to be considered (see ‘Long term involvement and ‘professionalisation’’).
Like a number of other researchers, Andy and Alison found it useful having a standing group of people who could be called on for different projects, rather than finding people just for one project. There can be benefits for researchers in finding someone quickly, and for group members who get to know each other well and form their own ‘community of practice’, as Andy put it. This kind of group enabled people to dip in and out and choose when and how to get involved in particular projects. At the same time researchers recognised the need to match people carefully to the needs of the project – which might or might not require specific lived experience. In some cases more general members of the public may be just as well able to contribute. As both Chris and Ceri noted, having structured organisational support can be really helpful in maintaining such a group. (See also ‘Organisational support and leadership for patient and public involvement’). Whilst some researchers had formal structures in place to help with finding people to become involved, others said their strategies were much more ‘ad hoc’.
Gail was worried at first that the young people she got involved in her 5-year project might not want to stay involved, but actually they have. However, Kristin and Sarah A noted that it can be difficult to keep a long-term group sufficiently engaged and interested. Others emphasised the importance of finding people to be involved in the early stages of project design and grant applications.
Hayley and Jo had both worked with people who were already involved to help recruit new people.
The need to find creative ways to get in touch with ‘hard to reach’ or ‘seldom heard’ groups (or ‘easy to ignore’ groups as one researcher put it) was a common theme. Several researchers had experimented with different models that did not rely on getting one or two people to come to a committee. Strategies included visiting existing community groups, support groups, schools and youth clubs, and enabling people to contribute through social media. (NIHR INVOLVE has specific guidance on using social media for involvement - see ‘Resources’). Marian’s clinical research fellow, when they were setting up a group of parents for a study about pregnancy and birth, suggested they invite people to bring their babies along too. She described it as ‘brilliant… it actually allowed almost more freedom because it didn’t matter what racket was going on.’
Researchers still had concerns about whether they were working with a sufficiently diverse group, and this is an issue we look at in more detail in ‘Representativeness and diversity of people who get involved’.

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