Learning to work together - lessons from a reflective analysis of a research project on public involvement

Abstract

Background Patient and public involvement (PPI) is now an expectation of research

funders, in the UK, but there is relatively little published literature on what this means in

practice – nor is there much evaluative research about implementation and outputs.

Policy literature endorses the need to include PPI representation at all stages of

planning, performing and research dissemination, and recommends resource allocation

to these roles; but details of how to make such inputs effective in practice are less

common. While literature on power and participation informs the debate, there are

relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to

knowledge, resources, and interpersonal respect. This article describes the findings of a

case study of PPI within a study about PPI in research.

Methods The aim of the study was to look at how the PPI representatives’ inputs had

developed over time, key challenges and changes, and lessons learned. We used realist

evaluation and normalisation process theory to frame and analyse the data, which was

drawn from project documentation, minutes of meetings and workshops, field notes

and observations made by PPI representatives and researchers; documented feedback

after meetings and activities; and the structured feedback from two formal reflective

meetings.

Findings Key findings included the need for named contacts who support, integrate

and work with PPI contributors and researchers, to ensure partnership working is

encouraged and supported to be as effective as possible. A structure for partnership

working enabled this to be enacted systematically across all settings. Some individual

tensions were nonetheless identified around different roles, with possible implications

for clarifying expectations and deepening understandings of the different types of PPI

contribution and of their importance. Even in a team with research expertise in PPI, the

data showed that there were different phases and challenges to ‘normalising’ the PPI

input to the project. Mutual commitment and flexibility, embedded through

relationships across the team, led to inclusion and collaboration.

Conclusion Work on developing relationships and teambuilding are as important for

enabling partnership between PPI representatives and researchers as more practical

components such as funding and information sharing. Early explicit exploration of the

different roles and their contributions may assist effective participation and satisfaction.