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

Abstract

Background: Processes 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. Methods: As 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. Discussion: Our 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. Conclusion: These 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.