‘You're there because you are unprofessional’: patient and public involvement as liminal knowledge spaces

Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service‐user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in‐between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces.     

Adapting patient and public involvement in patient‐oriented methods research: Reflections in a Canadian setting during COVID‐19

BackgroundProcesses of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of ‘nothing about us without us’ in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting.MethodsAs part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change.DiscussionOur reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI.ConclusionThese learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future.