New paper published! Public involvement in health research: What does ‘good’ look like in practice?
I first started writing this paper in my job prior to joining TREE, as Family Involvement Coordinator at PenCRU. In collaboration with the NIHR Applied Research Collaboration South West Peninsula and the NIHR Applied Research Collaboration North West Coast, we wanted to explore the similarities and differences between how the three different groups approached Patient and Public Involvement in Research (PPI). Using our three groups as case studies, we wanted to answer the question: how do you actually do PPI in practice?
Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.
We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.
A structured review identified research-based principles for ‘good’ public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.
We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five ‘values’ and seven ‘practice principles’ for ‘good’ involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.
Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what ‘good’ means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.