On crowns, caravans and windmills: Commentary on an essay by Turcotte P., et al.

Abstract

Patient-oriented research (POR) is a trend that has emerged over several decades and is particularly prominent in Canada, the United States and the United Kingdom. It involves patient and other stakeholder participation in the planning, conduct and dissemination of biomedical and health services research and it can be seen as a form of public participation and engagement in activities that affect the lives and well-being of communities. Criticisms of POR revolve around its susceptibility to tokenistic treatment of patient participants and paternalistic dominance of the research agenda by professional researchers, academics and clinicians. This commentary addresses one such critique by situating the POR agenda within the challenges and dilemmas faced by the health-related research enterprise over the past 30 years. It will explore the interface between POR, community activism and community-based participatory research. The contextual importance of the COVID-19 pandemic experience is stressed. The commentary will particularly focus on the US-based Patient Centred Outcomes Research Institute, its origins within a movement to enhance emphasis on publicly funded comparative effectiveness research, and its more recent evolution in the direction of community empowerment in POR.