Researchers' experiences of patient & public involvement

Alice

Female
Age at interview: 26

Brief outline: Alice’s job primarily involves research about children’s health. She began involving patients and members of the public in her research approximately two years ago.

Background: Alice is an Associate Research Fellow. Ethnic background: White British.

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Alice previously worked with a research group that had a large involvement panel. The role of the panel was to help the research team plan and decide the focus of their studies. Planning research was a joint effort between the panel and the researchers. The extent to which they were involved varied from project to project and sometimes there was less opportunity for involvement and for the panel to influence the research. A specific staff member was largely responsible for communication, but when Alice involved a smaller group of the panel members in her work, she took on the responsibility of communicating with them because they knew her as the researcher leading the project. 

There are research activities that Alice thought weren’t appropriate for people to be involved in, including sophisticated statistics that even she as a researcher wouldn't be able to comment on, but for which you need to rely on an expert statistician. So when some of the members wanted to get involved in more specific aspects of her study, Alice was initially sceptical because the tasks were tricky and detailed requiring experience and training. However, she and her colleagues compromised and were able to involve people from the panel in a particular aspect of the work, giving them help and support to do so. They found this worked really well and the panel’s involvement in this task was extremely helpful for Alice. 

The skills Alice said researchers need to involve people, include being personable and welcoming, flexible and open to what they may add to research. Initially it might feel worrying to relinquish some control and allow people to influence your research, but Alice also felt reassured by the knowledge that if she had any concerns or queries, she could get the opinions of the people whose lives it would affect. Researchers may be worried that they have to do everything suggested by people who they've involved, but Alice said this wasn't the case. If something unfeasible was suggested she would openly and honestly explain why it wasn't possible.  

There are benefits to involvement for researchers and for the people who get involved. Alice said it was one of the more fun and interesting parts of her job and described how people who had been involved said it had helped them regain a sense of self-worth. There are also challenges and frustrations associated with involvement, and one of the most challenging aspects for Alice was managing the expectations people have about what research can achieve and ensuring they don't have their hopes dashed.

Despite arguments for and against measuring or assessing the difference it makes, Alice said researchers should involve people. She has seen it working in her own research and is satisfied by that knowledge. She thinks it improves research, makes it more effective, ensures there's less waste (time, effort, money) and there are better outcomes as a result. In her former job, Alice’s colleagues were mostly positive about involvement, but in her new job no one seems to consider doing it. The programme of work she's doing is already underway so it seems like there is no scope to involve people, but she is trying to think of ways of doing this.

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