Researchers' experiences of patient & public involvement

Patient and public involvement can be an emotional experience for both the people who get involved and the researchers. Researchers’ feelings about involvement will affect how readily they adopt it as part of their normal practices and how they go about it.

Positive experiences
A common theme in the interviews with 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. Sergio said, “And most of all it has been a pleasure.”

Challenging experiences
At the same time, researchers could also find it ‘stressful’, ‘draining’ and ‘exhausting’. Catherine said it could be ‘nerve-wracking’, Alison described ‘occasions where I’ve been made angry or frustrated’, and Vanessa commented, ‘It is emotionally draining… sometimes it’s just challenging being challenged.’ There were several reasons why it might feel draining and tiring, including anxiety about not doing it well; dealing with tensions and conflict; feeling threatened or scared; and feeling personally responsible for the feelings and expectations of people getting involved. Emotions listening to patient and family stories
One of the biggest areas of emotional impact for researchers was around listening to people’s stories, which could be moving, distressing and inspiring in equal measure. Chris described it as a ‘privileged insight’ and Sergio commented that, ‘First of all it humbles research; it keeps telling us that we've loftier topics here. Second, it allows people to appreciate that a patient is not a symptom.’ Although very senior researchers talked of their own emotional responses, several worried even more about the impact on younger, less experienced researchers, and those who are unused to patient contact. Kristin was concerned that focusing too much on individuals’ stories risked casting them as powerless victims, and felt researchers needed to ‘be a bit matter of fact about it’. She was more upset by learning about the inequity of the social care system, and the stress of managing group dynamics. Emotional consequences for patients and carers
As these accounts suggest, there can be emotional consequences both for the researchers listening and for the patients sharing their experiences, and it is not always obvious what might prove to be an emotional issue. As Jo (above) said, ‘Something seemingly innocuous can just trigger something for somebody.’ Jim, who has experience both as a patient and carer adviser and as a research manager, said, ‘Somebody’s lived experience may come back and bite them.’ Both Marian (above) and Alice recommended some form of training to prepare researchers for dealing with these unanticipated situations. (See also ‘Training needs for involvement’). Marian suggested the need to support people who get involved was another reason why it was good to have several people involved, rather than just one or two. She had originally put some support mechanisms in place for a group of parents with difficult birth experiences, ‘but what’s actually happened is that they are getting the support from each other.’ Researchers’ own feelings and experiences
Jim talked about some cases where people have been motivated to become researchers because of their own family experience. He knew of a young doctor who ‘lost his mother when he was young to cancer, which is why he’s become a palliative care doctor. He described it as "the fire in the belly".' Another researcher we talked to explained that she was very conscious that her own experience of having a disabled older brother ‘influences a lot of what I do.’ In ‘Representativeness and diversity of people who get involved’ we discuss the extent to which researchers feel they can or should share their own health experiences and feelings. A related issue is the frustration and unhappiness some researchers feel about some of the discourse around PPI that tends to cast them as unfeeling and inhuman. Feeling ambivalent about involvement
Finally some researchers shared feelings of ambivalence about involving people. As noted in ‘reasons for involving people’ some felt pressure to do it because it was ‘trendy’, ‘fashionable’ and ‘politically correct’. Whilst it may be true that researchers are usually in a more powerful position than patients and the public, researchers can also feel disempowered and vulnerable, and unable to criticise involvement. Alison explained why she personally felt ambivalent.