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

Abstract

Plain English summaryPatient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research.There were different PPI roles in our study – some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time.The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people’s ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving ‘normalisation’ of new ways of working together over time, which both enriched the process and the outputs.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 PP...

An empirically based conceptual framework for fostering meaningful patient engagement in research

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Evaluation of a national training programme to support engagement in mental health services: Learning enablers and learning gains

“…In the present study, participants viewed as helpful the sense of mutuality and reciprocity. Peer instruction enhances participant engagement (Howe et al, ) and must be a central component in any PPI‐informed training. Furthermore, active engagement of all participants is key; otherwise, there is a real danger that participants may become passive recipients of yet another intervention.…”

“…In the present study, participants viewed as helpful the sense of mutuality and reciprocity. Peer instruction enhances participant engagement (Howe et al, 2017) is of concern, as improving skill acquisition was a central feature of this PPI training intervention. Striking a balance between theoretical knowledge and practical skills has presented challenges in previous coproduced educational initiatives.…”

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“…Research into PPI has mainly focused on the mechanisms of PPI, the varying perspectives on PPI and the motivations of the patients and public involved . A large body of research focuses on PPI in health research, particularly in more recent years. However, the specific role of patient and public involvement facilitators (PPIFs) remains under‐researched.…”