“What Is PER?” Patient Engagement in Research as a Hit

Abstract

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. "What is PER?" is an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research.

Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism

“…These barriers have created an unhealthy distance between those experiencing and those expertizing. For too long, the narratives of researchers/experts and citizens/patients have been tangential (Bélisle-Pipon, Del Grande and Rouleau, 2018). “Patient engagement in research,” “patient-oriented outcomes,” “patient and public involvement,” and the like all attempt to address the long-overdue reversal of epistemic devaluation of so-called “lay” peoples.…”