Researchers' experiences of patient & public involvement

Ann

Female
Age at interview: 55

Brief outline: Ann mainly conducts research in her job. She has been involving people for about twenty years.

Background: Ann is a professor of health services research. Ethnic background: White Welsh.

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For Ann the purpose of involvement is to ensure that research focuses on what’s important to patients, ‘so that we don’t get lost in what’s interesting to researchers or medics or providers of services’. She believes that patients should be involved, but said that others don’t agree. As it’s now an important part of successfully gaining research funding, she said there was a risk that it could be done in a tokenistic way. 

About twenty years ago, Ann involved a service user in her research because she was keen to hear the patients’ perspective. The woman had direct experience of the life-threatening condition she and her team was researching, and because she wasn’t in good health, they had to be flexible in how she was involved. Ann said this service user changed the discussions the team had. When the researchers and clinicians were discussing what they should be measuring, the service user would remind them to think about would be like for a patient. Whilst one of the consultants was quite dismissive of her because he couldn’t see the value of her perspective when he was simply interested in recording measurements, Ann felt she ‘made a contribution to the way we did the research and the way we interpreted the research’. She ‘fundamentally changed the interpretation and the write up of what we did.’ 

However Ann finds it hard to see how some of the patients and members of the public who are involved in the work she’s doing now make a difference. During meetings, they often go off the point and this means what they think they’re contributing cannot be applied to the research. This makes involvement difficult. In her department, patients and members of the public volunteer to become involved, but Ann thinks there should be a more formal selection process where people’s skills are taken into account. She thinks it’s important that people who understand the issues surrounding the research are involved and said this wasn’t likely to be just anyone – probably ‘people with higher than average intelligence and professional skills’. She thought the solution might be to have a general panel that anyone could join, but also some people who were chosen specifically for their skills. 

Ann said involvement is costly in terms of time and money, and that it’s important to look after the people who get involved. She said, ‘it’s not easy and doesn’t just happen unless you’re really committed to it both in principle and in practice and in resources’.

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