Researchers' experiences of patient & public involvement

Eric and Ceri

Brief outline: Ceri is responsible for encouraging and supporting the involvement of patients and members of the public in research, and her doctoral work was about involvement. She came to academia after working as a community development officer. Eric previously worked for a social research company in which there was a big emphasis on involvement. They have been involving people in their work for about 14 and 11 years respectively.

Background: Eric and Ceri work together. They are health services researchers working in emergency care. Ethnic background: White British.

Audio & video

Having joined the university after doing non-academic jobs, Ceri and Eric both noticed that the way things were done was, as Ceri said, ‘very apart from an everyday way of doing things’. And Eric said that ‘recognising there is a difference’ was important when involving service users. 

Their views on what involvement is differed. Eric included qualitative research in his definition, but Ceri said for her it was about having an active role in designing, developing, undertaking and disseminating research. They thought their differing views might be down to an issue of language, which they felt indicates that there is a diverse range of understandings and definitions of what involvement actually is. But they agreed that involving people well was more important than defining involvement and that its ultimate purpose was to improve research. 

Both felt that health services research needed input from service users and described a study they’ve applied to have funded in which one of the objectives was defined by them. Ceri said, ‘They came up with something which we hadn’t thought of at all... And we would have missed a trick if we hadn’t sat down and talked together... and bothered to listen.’ They agreed that the proposed research was better for involving service users and Eric said, ‘Funding bodies will like that perspective as well.’ 

However, in their experience, Eric and Ceri said that meetings with service users can also be frustrating, especially if they seem to be discussing things that aren’t relevant to the research. They also said it can be difficult to interpret and translate what people say and use it to make a difference to the research. 

They agreed that the difference involvement makes isn’t always an obvious one because service users might say things in meetings that may influence researchers’ thinking without anyone realising at the time. They felt it was useful to reflect on the impact of involvement, although this doesn’t happen routinely as researchers move on to doing different projects and don’t usually make the time.

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