Patient and public involvement in research

Fenella

Female
Age at interview: 41

Brief outline: Fenella became a PPI representative after taking part in a research project. She works with a local Mental Health Research Network and has been involved in designing and planning research proposals.

Background: Fenella is single and works as a clinical audit assistant in a mental health NHS trust. Ethnic background: White South African

Audio & video

Fenella became involved in PPI in research after taking part in a randomised trial comparing partial hospitalisation with standard community treatment for a mental health condition. When her psychiatrist told her about a paper he had published based on the results of the research she said, “I felt quite touched that I was part of that process to help inform about a treatment”. This experience and her psychiatrist’s active involvement in clinical research inspired her to become involved in PPI. She was fascinated by research and said she “wanted to be part of that buzz”. She contacted the Mental Health Research Network (MHRN) and offered to become a PPI representative. Although Fenella is aware that lay involvement in research is important in ensuring it gets funded, she didn’t feel this was the main reason the MHRN involved her. 

Since she joined the MHRN, Fenella has been involved in numerous aspects of the research process. As well as helping to plan research grant applications she had the opportunity to develop her own idea for a research project. The researchers she was working with supported her ideas and they worked together to prepare a proposal. Unfortunately, the project was not approved for funding. She was disappointed, but was reassured by the research team that they would try again. She feels her contributions have been valued by researchers and that her input isn’t seen as tokenistic.

After her experience of participating in a trial, Fenella is keen to encourage researchers to share the outcomes of their studies with participants. She thinks it is important that the results are communicated in accessible language and for participants to have an opportunity to ask questions. She is a strong advocate for more research into mental health treatments, especially non-drug interventions such as cognitive behavioural therapy and computerized support packages. She is experienced in PPI representation in research on personality disorders, eating disorders and psychological therapies. She has also been invited to help out with some schizophrenia research. Her advice to other people is to find out what research is going on locally and think about taking part if possible. Trials are in her view crucial for developing new treatments and making sure they work. Her message to professionals is that research is exciting, and that if they are not involved they should be.

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