Patient and public involvement in research

As we have described elsewhere, people got involved initially for a mixture of reasons, including wanting to help others and improve medical science, as well as possible personal benefits. Not surprisingly these same motivations were still at the heart of why they continued being involved. We also asked people whether they had discovered other reasons or benefits they had not anticipated, and whether their motivations had changed.  

Discovering how much they enjoyed the intellectual challenge and talking to researchers was a common theme, even if at first it could be daunting or frustrating when researchers didn’t listen (see Difficulties and barriers to involvement’). Meeting and talking to other lay people was also rewarding and led to some firm friendships – though as Carolyn pointed out, it could be sad too, when friends with a serious illness died. The same words occurred again and again in what people said, including ‘fascinating’, ‘exciting’, ‘rewarding’, ‘satisfying’, ‘challenging’ and ‘fun’. People often said how ‘passionate’ they were and how much enjoyment they got from it. There was even a sense that it could be addictive. Maggie was typical in saying it was difficult to say no to new projects: ‘It's very seductive. It's very exciting and fascinating... You feel extremely valued. You feel that you are making a difference.’ But, as both Helen and Charles pointed out, it would be even more motivating if they got more feedback on what difference they have made and what the research has achieved.   Getting involved in research was something several people described as life-changing, perhaps because it gave them new hope and purpose after serious illness, or because it became a second career, or both. It was a route to new skills and confidence – for example learning how to speak in meetings, give talks and presentations, write papers for publication, and take part in national policy development. However, Sharon felt unsure how she might use her new skills.   Although some people had got involved originally to help with their own recovery, this sometimes happened in a way they had never expected. Brin said, ‘I think if I had an outcome of my work in PPI it’s I think I do things better now than I used to. I've used all my old skills, all my old knowledge and understanding, but I apply them in a very, very different way.’ In Maxine’s case, her involvement work unexpectedly helped her cope when her husband became seriously ill. Another unexpected benefit of involvement was feeling more informed about health generally and more confident when visiting the doctor. Other things people enjoyed included travelling to new places and getting to attend conferences - sometimes abroad - although not everyone could travel or wanted to and it often depended on funding and whether opportunities were put their way.

Involvement can become very time-consuming and tiring, and it may all get too much for people. Sometimes the difficulties and frustrations may make people give up. Neil got involved to help his recovery after a stroke, and was now starting to reduce his level of activity again. He said, ‘Socially, emotionally and intellectually it's been very helpful. And that was the reason why I did it and fine, when I feel I've recovered fully I might not bother with it, it just depends.’ Hazel knew of people who had dropped out when involvement didn’t live up to expectations. Jennifer was not volunteering for anything new in one of the groups she’s involved in until her expenses came through – the delay in payment made her feel undervalued. Francesco was frustrated by the feeling that processes for selecting people were not always open and transparent, and that the same people were favoured each time.

Several people who had themselves been involved in many different roles wondered if – much as they enjoyed it – there would come a time for them to step down (see ’Long-term involvement and expertise’). But others found the more they became involved the more they enjoyed it and wanted to continue their involvement. Like Helen, some others were interested in a career in involvement. Rosie and Kath had decided to do PhDs, studying how patient and public involvement works and what the experiences are of people who get involved. Rosie said, ‘I didn't suddenly have an “ah hah” moment, “yes, I'm going to be a researcher”….You set off on an unknown journey and you end up somewhere you didn't expect.’
 
These and other issues are discussed further in ‘Long term involvement and expertise’ and ‘Difficulties and barriers to research involvement’.

Last reviewed July 2017.