Patient and public involvement in research


Age at interview: 58

Brief outline: Jennifer has been involved as a patient and public representative in health research for about five years. She became involved after she began caring for her mother when she developed dementia.

Background: Jennifer is married and has two children, aged 38 and 36. She is a housewife. Ethnic background: Welsh/Jewish.

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Initially, Jennifer got involved in PPI when she became a governor in her local health care trust. Knowing that she was a carer for her mother who had dementia, a friend introduced her to the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN). She took up the role of patient and public representative after being interviewed for the position. Initially, she felt daunted by the experience. She didn’t really understand what was going on because the other members used a lot of technical terms and jargon.

Jennifer invests a significant amount of time in reviewing research proposals, spending about a week reading each one. She reads them bit by bit and eventually starts from the end and reads them backwards because she feels this gives her a better understanding of the proposal and highlights what isn’t clear. Her work also involves a lot of travelling, which can be tiring and expensive, and Jennifer feels very frustrated when her expenses aren’t reimbursed on time. She said, “It’s not the money, it’s the principle of it. We’re doing this in our own time…and it would be nice to be appreciated”. She also felt it was important for researchers to recognise the work PPI representatives put in by feeding back to them what impact they have had on their research. 

When she started with another research network, Jennifer was assigned a mentor, although as she knew what her role entailed, she felt she didn’t need one. However, she thought new PPI representatives would find a mentor helpful to understand what to do in the role and to iron out any problems they may have, including things like reimbursement of expenses. 

In doing her PPI work, Jennifer draws on her experience of caring for her mother. She always thinks about what taking part in the research would be like for participants. She thinks having experience of being a patient or carer is important for people involved in PPI, but they should also have some scientific knowledge. She said PPI is not for everyone, but that she has learned a lot from the work she has done. 


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