Researchers' experiences of patient & public involvement

Tina

Female
Age at interview: 56

Brief outline: Tina has been involving people in participatory action research for about 15 years.

Background: Tina is a Reader in Inclusive Methodologies. Ethnic background: White British.

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Tina initially worked in a preschool service with children with special needs and their families. She wanted to do some research that could make a difference to practice. She started doing some action research (a problem-solving approach conducted by and for the participants) and realised that it would have been improved if she had involved parents from the beginning. 

After doing some more participant evaluation projects, she started working with men who had learning difficulties, researching their understanding of consent and ethics. She involved the men in all stages of the research process and has continued to do this in the research she’s conducted since. 

In order to effectively involve people, Tina believes researchers should be skilled at building relationships, but they need a thick skin and lots of enthusiasm for it. The benefits of involvement outweigh its costs as far as she’s concerned, but she would like to see more recognition of how ‘draining’ it can be for researchers. Tina also said there needed to be money invested in involvement and that universities should ensure their organisational and bureaucratic processes, for things like reimbursing people’s expenses and issuing honorary contracts, are appropriate and work well. 

In her experience, Tina has found that involving people has made a significant difference to the research she’s worked on. She thinks it’s always important to feed back to them how they’ve had an impact. But when she’s done this, she noticed that people find it hard to believe that they have made a difference. 

A lesson she’s learned from experience is that it’s important to try and prepare people for what happens when their involvement ends. She said that involvement leads people to ‘have their ways of thinking challenged, [and] they want to continue challenging their ways of thinking’. In the next project she plans to be more aware of how to make sure that people leave projects with an outlet for their knowledge. 

Tina benefits from involvement both professionally and personally. She thinks the research she conducts relies on involvement saying, ‘If we only bring our own knowledge to a situation, we can only reap our own knowledge’. She recommended that we think of other ways of demonstrating the impact of involvement than simply trying to measure it.

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