Patient and public involvement in research

Kath

Female
Age at interview: 55

Brief outline: Kath has been involved in PPI for 11 years. She got involved after her son died. She had been caring for him for 20 years. Kath’s extensive involvement in PPI includes reviewing funding proposals for the National Institute for Health Research and Research for Patient Benefit. She is a member of the Collaboration for Leadership in Applied Health Research and Care (CLARHC) for the South West Peninsula, through which she encourages patients and members of the public to suggest ideas for research.

Background: Kath is single. She has one child who is 17 but sadly lost another child after a lengthy chronic illness. She works as a consultant, training lay people to understand research and participate in PPI, and is undertaking a PhD in experiences of PPI.

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For 20 years Kath cared for her son who had a long-term condition. She got involved in PPI after he died. Initially this was through his hospice, but she then received invitations to sit on other panels. At that time, she found the work “too confronting” and didn’t feel she was ready to contribute, so she withdrew. She went back to university with a view to becoming involved in the health service. However, she later returned to PPI after a friend alerted her to a call for lay members to sit on the National Institute for Health Research (NIHR) and Research for Patient Benefit (RfPB) review boards. Kath was keen to be involved, but found the experience daunting after receiving a large batch of printouts of the twenty research proposals she had to review. She spent weeks googling terms and trying to figure out what she needed to do. At the review board meetings she realised what was expected of her; she didn’t have to be an expert, but should try to put herself in the patients’ boots. Learning what she didn’t have to do was as important as learning what she did have to do. 

Getting involved in PPI was a way for Kath to turn the painful experience of bereavement after caring for her son into something positive. In part, she became involved to give back and improve things for other people, but she also wanted to reinvent herself and find “a new way of being in the world”. She has benefited from engaging in PPI by meeting people she likes to spend time with, and by being part of something she finds interesting and exciting. Feeling that her contribution is valued depends largely on the skill of the other group members. At meetings with clinicians and researchers Kath doesn’t feel she has anything to prove as she represents the patient’s and lay person’s views. But she realised that the professionals on the panels are being judged by their peers and are taking a bigger risk in offering their opinions. Realising this was enlightening for her.

Kath thinks patients and members of the public should be involved in all aspects of research because it is publically funded and their involvement brings improvements, although the extent of these improvements is difficult to capture. She established a consultancy business through which she trained members of the public to better understand research and is proud of this work. She doesn’t think training is necessary for all aspects of PPI, but said people need a clear idea of what is expected of them. She also feels that there needs to be good communication between researchers, PPI reps, and participants so they know what to expect in terms of timescales for research projects and feedback. 

Some of the research projects Kath has reviewed have been emotionally challenging because they reminded her of her experiences with her son. But she made a conscious decision to deal with this. She enjoys being involved, and is pleased to have met so many amazing people and to have learned so much from her experience, including the chance to undertake a doctorate on the experiences of taking part in PPI. She would encourage others to get involved, saying they can “dip a toe in the water” and tailor their involvement to include things that interest them. 

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