Researchers' experiences of patient & public involvement

Sarah A

Age at interview: 32

Brief outline: In her job, Sarah teaches and conducts health research. She has been involving patients and members of the public for about two and a half years.

Background: Sarah is an academic research fellow. Ethnic background: White British.

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Sarah’s background is in psychology. In her current role as a research fellow, she’s been working on trials and interviewing patients. She began involving people in her research when she was applying for her fellowship, explaining that for her at this stage it was a strategic move. A colleague put her in touch with a patient who had an idea for some research. They submitted a funding application together, which was successful. Having done this, Sarah was invited to speak at training events and has since become involved in delivering training about involvement.
The reasons Sarah continued to involve people in her research aren’t the same as why she started doing it. She described herself as more interested in and committed to it, and said she had lots of questions about it that should be answered. What is involvement? How does it improve research? How can it be made consistent and standardised?
Whilst Sarah said researchers are obliged to do it because research is funded using taxpayers’ money, she recognised there were factors that made this difficult, especially current attitudes to involvement. She suggested that funders don’t adequately resource involvement, so it doesn’t stand the best chance of making a difference to research. Equally, responsibility for it is usually given to the most junior, and least experienced, member of the research team, and Sarah would like to see more senior academic staff engaging with it. She also said that universities need to be better equipped to deal with patients and members of the public, particularly when it comes to the time it usually takes for expenses to be reimbursed.     
As Sarah sees the research she conducts as a collaborative effort with patients and members of the public, she thinks all members of the project team should have an equal say in it. Whilst she said she believes in the value of involvement and that it can make a difference, she recognised there are potential problems with it and is frustrated that these are often not reported; only the benefits of involvement tend to be written about, which will not convince sceptical researchers.
Sarah believes most researchers are motivated to make a difference for patients and would encourage patients not to collude with those who may be see involvement as a tokenistic exercise. She thinks more research is needed to build up the evidence base for involvement and that researchers shouldn’t be afraid to only report the positive impacts they’ve found. She would like to see more accountability and transparency in the reporting of involvement.  


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