Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study

Abstract

Methodological research is often abstract, heavily theoretical and jargon laden. Despite having significant implications for the users of health and social care services, it can be difficult to involve the public and patients in research that is oriented towards more academic ‘ways of knowing’. This article combines Public and Patient Involvement and Engagement (PPIE) and university researcher perspectives on their experiences working on a study that aimed to develop a new evaluation approach. Using a co-produced reflective case study design, four university researchers and three (representing a wider group of six) PPIE contributors reflected on their shared experiences of PPIE within the Realist Economic Evaluation Methods (REEM) methodological study. Reflections were gathered during a structured two-hour workshop, which identified three broad initial themes. These were explored in depth by academic/PPIE writing duos across two online follow-up meetings, producing collaborative written summaries. A fourth academic synthesised the summaries to ensure coherence and the final manuscript was examined and approved by the full team. The challenges encountered during the study were organised into three broad themes: (1) Identifying appropriate PPIE contributors; (2) maintaining and sustaining engagement; and (3) determining when and how best to engage. We propose that PPIE in methodological health and social care research requires different considerations than PPIE in applied research, including actions to normalise uncertainty and be creative about modes of contribution as part of co-learning. We have articulated these as recommendations, with implications for funders/commissioners of research, university researchers and PPIE contributors alike. Patient and Public Involvement and Engagement (PPIE) is critical in making health and care research meaningful and relevant for those it seeks to help. Implementing PPIE in applied research, specific to a particular health condition, social issue or population, can be more straightforward compared with implementing PPIE in more abstract, theoretical or methodological research (i.e., research that focuses on developing, testing and refining the tools, techniques and approaches that other researchers use). This article reports the experiences of PPIE contributors and university researchers working together on one such study, which combined two different methodological approaches. A workshop was held towards the end of the study to gather the team’s reflections on working on a project where the public beneficiaries were not immediately clear. Challenges included, (1) how to identify the most suitable PPIE contributors for such a study; (2) maintaining and sustaining their engagement; and (3) developing methods and activities that would enable PPIE to contribute most meaningfully, beyond tokenistic engagement. We conclude that PPIE in methodological research is possible but must be considered different from ‘standard’ PPIE practices in applied research, requiring careful planning by research teams. To this end, we have compiled some relevant considerations and recommendations – potentially the beginnings of a more formal framework – to help methodological research teams and PPIE contributors work better together.