Patient and public involvement in research

Janice

Female
Age at interview: 66

Brief outline: Janice initially became involved in PPI by joining an ethics committee as a lay member. She later went on to become chair of the committee.

Background: Janice is married with one grown-up child, and a grandchild. She is a retired college lecturer. Ethnic background: White/British.

Audio & video

When she was working as a college lecturer, an ethics committee gave what Janice perceived as an unfair review to one of her student’s research projects because they didn’t see the value in doing qualitative research. Later Janice heard a local committee was looking for lay members, so she joined, determined to champion qualitative research and explain why it matters. Her role involved reviewing research proposals to see if they met ethical standards. Initially she felt she had to prove herself to the other members, who were clinicians and researchers, and show them she could contribute more than just commenting on information sheets. About two years later she became the chair of the same committee. By that stage she said she felt accepted by the others and was confident she could do the job. 

Over the years, Janice has seen changes in the way ethics committees are structured. They attract very highly qualified people to provide a lay perspective, but these are often academics and researchers, and Janice isn’t sure how they can put their professional views to one side and contribute as lay people. By involving lay people Janice thinks the realities of participating in research will be thought about from the participants’ point of view as well as the researchers’. Because she thinks this could help recruitment, she said researchers should involve patient representatives from the early stages of designing studies. Although it is difficult to measure the impact that this involvement makes, Janice thought it was important to record it and suggested researchers write about PPI in their publications in the same way they record information about their ethical approval. 

As well as her work on the ethics committee, Janice was a member of the Diabetes Research Network and is a lay reviewer for a funding board. She has also delivered training in ethics for other committee members and researchers from universities, the NHS or pharmaceutical companies, and has worked in evaluating services in her local trust. Having done PPI for about 18 years, Janice said time-limited positions were a good idea because it meant that new people with fresh ideas could get involved. But she felt there should be roles for long-serving PPI representatives to move into so that research could benefit from the skills they’ve learned. She would feel sad if she had to stop doing PPI because she enjoys the work and the other people she meets, and feels excited that she’s contributing to something that could make a difference.

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