Researchers' experiences of patient & public involvement

Catherine

Female
Age at interview: 29

Brief outline: Catherine’s job involves research and teaching. She began involving patients and members of the public in her research approximately one year ago.

Background: Catherine is an academic health researcher. Ethnic background: White British.

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Catherine predominantly does qualitative research and has been a co-applicant on several funding proposals. She learned about patient and public involvement (PPI) when a researcher leading a recent funding application she was working on asked her to take charge of the PPI strategy. Catherine thought she was chosen to do this because she’s a qualitative researcher with a lot of experience working directly with participants/patients and said it felt like the researcher just wanted to tick the right boxes.

At that time, Catherine began to learn about involvement by reading some articles and consulting the INVOLVE website. Despite being given no guidance or training, she devised a plan to involve 4 – 6 people to assist the research team throughout the entire five-year project, designing the study, reviewing information leaflets, disseminating the research and giving advice where necessary. She incorporated a plan for training and costings to ensure people would be paid for their time and be reimbursed for expenses. The funders gave a mixed review on the proposal – some liked it and some didn’t, so it was difficult for Catherine to evaluate how effective the strategy was. She was surprised when one of the reviewers said she wasn’t qualified to lead the involvement because it could be argued that no researcher is qualified to do it. 

Leading something she feels she doesn’t have expertise in was a bit nerve-wracking for Catherine. She said she seems to have become ‘the PPI person’ at work and colleagues have asked for her advice, but she doesn’t feel she has sufficient expertise to provide this. She also thinks that as PPI isn’t valued as much as publishing academic articles or applying for funding, her career may be hindered if her time is taken up advising others on involvement. If it is to be done right, it needs proper resources and administrative support to arrange meeting dates, book rooms and reimburse travel. 

Catherine felt her colleagues hadn’t quite made up their minds about PPI. Some see it as a box-ticking exercise, but others are supportive. Her institution is discussing setting up a panel of patients and members of the public that the researcher staff could involve as and when they needed to. She questioned whether long-term involvement like this would lead to people losing their patient perspective and become more professionalised or like researchers. However, Catherine thinks involvement will enhance her research and will make it more relevant to patients. She said it’s important to actively involve people who aren’t well-educated middle class people so that research can benefit from a range of views. She questioned the current evidence on the effectiveness and impact of PPI as there is little research demonstrating its benefits. Nonetheless, she is convinced that it is worth doing. She would encourage patients or members of the public not to be shy and to get involved in research.

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