Kath has been involved in PPI for 11 years. They got involved after her son died. They 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. They are a member of the Collaboration for Leadership in Applied Health Research and Care (CLARHC) for the South West Peninsula, through which they encourage patients and members of the public to suggest ideas for research.
For 20 years Kath cared for their son who had a long-term condition. They got involved in PPI after he died. Initially this was through his hospice, but they then received invitations to sit on other panels. At that time, they found the work too confrontin and didn’t feel they were ready to contribute, so they withdrew. They went back to university with a view to becoming involved in the health service. However, they later returned to PPI after a friend alerted them 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 they had to review. They spent weeks googling terms and trying to figure out what they needed to do. At the review board meetings they realised what was expected of them; Kath didn’t have to be an expert, but should try to put themself in the patients; boots. Learning what they didn’t have to do was as important as learning what they did have to do.
Getting involved in PPI was a way for Kath to turn the painful experience of bereavement after caring for their son into something positive. In part, Kath became involved to give back and improve things for other people, but they also wanted to reinvent themselves and find a new way of being in the worl. Kath has benefited from engaging in PPI by meeting people they likes to spend time with, and by being part of something they finds interesting and exciting. Feeling that their contribution is valued depends largely on the skill of the other group members. At meetings with clinicians and researchers Kath doesn’t feel they have anything to prove as they represent the patient’s and lay person’s views. But Kath 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 them.
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. Kath established a consultancy business through which they trained members of the public to better understand research and is proud of this work. Kath doesn’t think training is necessary for all aspects of PPI, but said people need a clear idea of what is expected of them. Kath 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 them experiences with her son. But they made a conscious decision to deal with this. Kath enjoys being involved, and is pleased to have met so many amazing people and to have learned so much from their experience, including the chance to undertake a doctorate on the experiences of taking part in PPI. Kath would encourage others to get involved, saying they can dip a toe in the wate and tailor their involvement to include things that interest them.