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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.