What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories

Abstract

Public and patient involvement (PPI) in health care may refer to many different processes, ranging from participating in decision-making about one’s own care to participating in health services research, health policy development, or organizational reforms. Across these many forms of public and patient involvement, the conceptual and theoretical underpinnings remain poorly articulated. Instead, most public and patient involvement programs rely on policy initiatives as their conceptual frameworks. This lack of conceptual clarity participates in dilemmas of program design, implementation, and evaluation. This study contributes to the development of theoretical understandings of public and patient involvement. In particular, we focus on the deployment of patient engagement programs within health service organizations. To develop a deeper understanding of the conceptual underpinnings of these programs, we examined the concept of “the patient perspective” as used by patient engagement practitioners and participants. Specifically, we focused on the way this phrase was used in the singular: “the” patient perspective or “the” patient voice. From qualitative analysis of interviews with 20 patient advisers and 6 staff members within a large urban health network in Canada, we argue that “the patient perspective” is referred to as a particular kind of situated knowledge, specifically an embodied knowledge of vulnerability. We draw parallels between this logic of patient perspective and the logic of early feminist theory, including the concepts of standpoint theory and strong objectivity. We suggest that champions of patient engagement may learn much from the way feminist theorists have constructed their arguments and addressed critique.