Researchers' experiences of patient & public involvement

Alison

Female
Age at interview: 47

Brief outline: Alison conducts health services research. She has been involving patients and members of the public in her research for approximately eight years.

Background: Alison works as a senior research officer. Ethnic background: White British.

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Alison found it hard to say when exactly she began involving people in her research because she started doing around 20 years ago when it wasn’t formally labelled as involvement. In her current department, a colleague founded a group of public members who are interested in being involved in research. Alison thought this was helpful because she doesn’t have to go out and find people. But she said a downside to having an established group might be that she could end up working with the same people all the time, which may ‘close you off a bit to other possibilities...so you have to be a bit careful’. 

Alison thought that in some ways involvement should be treated like a job because people are paid a daily rate to be involved. She suggested that how people are recruited and selected needed to be given more thought, but recognised that a formal selection process might not improve the power imbalance between researchers and members of the public. 

Thinking about the purpose of involvement, Alison said that getting people to check aspects of the research process (e.g. reviewing information sheets) was important and that interacting with them was a reminder for researchers not to think about people as ‘a set of symptoms’. But she thought it would be inappropriate for people to be given free rein in deciding what should be researched. Alison recognised that involvement was important for getting funding and said that one of the risks of enforcing it as an important part of research was that others might approach it as a ‘tick-box’ exercise. 

In previous projects, Alison involved people in analysing qualitative data, but found that this wasn’t particularly successful. She felt uncomfortable about it and said that without being trained in this type of analysis it’s difficult to do a good job. To involve people to analyse data effectively would require proper training and support, but finding the time and resources to do this would be tricky. 

There are challenges with involving people that Alison said needed to be considered including what to do when people focus only on their own experiences. She said that good communication skills and empathy were important to successfully involving people. Alison said the benefits of involvement outweigh the costs, but it’s important for researchers who are involving people to have a clear idea of why they’re doing it.

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