This week saw the launch of a new section on healthtalk.org about health researchers’ experiences of involving patients, families and the public (patient and public involvement – PPI) in their research. In this guest blog, project leads Louise Locock and Anne-Marie Boylan explain what they found.
This is a companion study to our previous work for the BRC on patient and public experiences of involvement, and the first Healthtalk section focused on staff.
We know from many sources that some researchers recognise PPI as important but don’t necessarily find it easy. This may be in part because it’s still a relatively new concept, and people’s ability and willingness to adopt new practices (in this case, PPI) are affected by a range of factors. These include their knowledge of the practice, their skills and confidence, motivation, beliefs about what will happen if they do or don’t adopt the new practice, the norms of their working environment, their professional identity, and their emotions1 .
In this new section you can see and read accounts from 36 researchers working across a range of clinical and social science studies about what they think about PPI; why they have been interested to adopt it; how they have done so; how it has changed what they do and how they think; and what difficulties and frustrations they have faced.
Participants told us that the emphasis on embedding PPI from the National Institute for Health Research (essentially, the research arm of the NHS) has been immensely influential. Some admitted they did PPI at first mainly because they had to, but in so doing their views changed and they were now genuinely interested in how it could improve their work. But the dangers of a tick-box approach were still widely recognised, and there was some concern, even amongst those who were largely positive about PPI, about having to be seen to be ‘politically correct’ and never question its rationale or value. As one researcher said, ‘It’s a complete nightmare because I’ve got to be really careful as to what I say and do. And as well like PPI’s really trendy at the minute and I’m not saying it hasn’t got a place, but….it’s like, “Oh, brave new world”.’
Such concerns are probably reflected in the fact that many of our participants chose to be included only in written or audio form on healthtalk, and a few people we interviewed decided to withdraw.
Perhaps more commonly, people expressed their fears of being plunged into PPI without enough preparation, skills and practical advice, even if they want to do it and think it is important. Some reported that PPI is often undervalued by senior staff in their organisation, and regarded as something to delegate to more junior (and often female) staff. By contrast, those in organisations where a commitment to PPI was part of the prevailing culture and where senior staff led by example felt inspired. Having a dedicated PPI co-ordinator and good admin support also helped.
We heard many positive and enthusiastic accounts of PPI, and real commitment to doing it well. A common theme among researchers was how enjoyable and rewarding involvement could be. They talked about feeling energised, inspired and enthused, having fun, and feeling it made their research more worthwhile, relevant, and interesting. The site includes advice on how to make PPI work better and examples of how it has improved research.
As Stuart explained, ‘We found to our pleasure that actually if we spend quite a bit of time talking to people before we started just doing the thing we thought we should do, they kind of said to you, “Well, if you do it that way I wouldn’t have taken part, but if you do it that way I might”. So as we started doing that, what we saw was we found it easier to recruit people into trials, studies, we found it easier to keep their interest and involvement and that’s been a kind of overwhelming message.’
Of course we are researchers too – and we know we often don’t get this stuff right ourselves. We’ve ‘been there, done that’ when it comes to involving people too late; finding it difficult to use what they say; chairing meetings badly; failing to be clear what we expect of people. Doing these two studies on experiences of PPI has caused us to reflect on and improve our own practices, and we hope this new study will help other researchers do the same, by learning from others’ experiences, knowing how they have overcome barriers and fears, and seeing practical examples of how it has changed research for the better. We leave the last word to participant Hayley:
‘My message for researchers would be don’t think you’re alone in doing this. There are people out there who are already undertaking involvement with the public. And speak to as many people as you possibly can. Ask them how they’re doing it. If this is your first time of doing it, ask them about the ways they’re doing it and what have they found has been the barriers for them and what has been the facilitators….Look who else is out there, contact people, ask them how they’re doing it and just get as many tips as you can…..I would give them examples where I would try and let them know that this has made a difference for the better and yes, these are just one or two anecdotal things from me. But these are real examples of how it has helped people.’
1 Read more in this article by Susan Michie and colleagues if very keen.