Researchers' experiences of patient & public involvement


Age at interview: 39

Brief outline: Valerie’s job involves conducting research. She began involving people in her research approximately six years ago.

Background: Valerie is a research fellow. Ethnic background: White British.

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Valerie has a background in psychology and has worked in research for a number of years. In her current job there is a formal involvement strategy and an existing panel of parents of disabled children who were involved in the research through email or in person. As well as suggesting research ideas and guiding the research, the panel has been involved in analysing data from interviews and in a new project some of them may be conducting some interviews. They have also been involved in giving presentations about the research at conferences. Valerie thinks that involving people in disseminating research and getting it to the people who are interested in it is one of the most important aspects of involvement. 

Valerie said it can be scary to start a project with involvement because you’ve no idea what you’ll end up doing and that your research isn’t ‘yours anymore’. Letting go and giving up control can be difficult, but it makes sense to Valerie because she believes its right for people to have a say in research that’s about them. She has had no training in involving people, but thinks training could help researchers understand the value of involvement rather than seeing it as a tick-box exercise. She has learned about involvement through trial and error, and also by going to conferences and hearing how other researchers and members of the public work together. 

It isn’t always easy for the parents to see what impact they’ve had or difference they’ve made. Valerie said there are things that are more obvious, but there are also invisible things that aren’t easy to observe or measure: ‘it can change the way I might be thinking about a problem… because it’s come from their knowledge and expertise in that area’. She also felt it’s important that the parent panel knows they’re valued. She and her colleagues do this by providing good lunches and refreshments at meetings, taking a personal interest in the members, and organising an annual fun day, which is a way of getting everyone together to thank them. She said that the impact involvement has on the parents shouldn’t be underestimated and that it’s important for researchers to recognise this and ensure they are giving something to people and not just taking from them. Valerie described involvement as ‘brilliant fun’ and said it has made her ‘think in a completely different way’. 


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