Researchers' experiences of patient & public involvement


Age at interview: 40

Brief outline: Suzanne manages a programme of research. She has involved both young people and adults in her research over the last six years.

Background: Suzanne is a project manager and works in health research. Ethnic background: White British.

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Suzanne works in social science and health services research. Her research largely looks at patients’ thoughts about and experiences of illness, and the healthcare they receive. She has recently begun working on setting up an involvement forum for young people with arthritis, and started out by working with young people to find out what involvement means to them. The forum is likely to have an input into deciding what gets researched and designing studies, and perhaps involving some of the young people as co-researchers. 

In addition to this project, Suzanne is also working on a European project about medicines development in which patients are involved. 

Suzanne believes involvement is about decision making and should be more than just consulting patients. She acknowledged that there may be some areas of perhaps laboratory-based research in which it would be harder to involve people, but believes they should be involved in all other types of research. She said researchers can forget how institutionalised they become and that working with patients gives broader insights that you wouldn’t get otherwise. There is guidance about how to involve people, but Suzanne said would really like to see examples of researchers’ experiences of it, including the problems they’ve had. 

Thinking about demonstrating the impact of involvement, Suzanne said it should be done using a range of methods and that qualitative methods, like observing what happens at meetings between researchers and patients or members of the public, might be useful.  

Suzanne’s feelings about involvement have changed in recent years. Initially she didn’t feel confident about doing it, but doing some research about it with the young people with rheumatoid arthritis has helped her think differently. She would encourage other researchers to involve people because ‘it may reap some benefits’.


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