A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one

Abstract

Plain English Summary Patient-oriented research gives patients, families, and caregivers opportunities to become members of health care research teams. Although academic researchers may be aware of what patient engagement is, they may not understand how to develop effective relationships with their patient partners. Academic researchers need this guidance because earlier research has shown that patient partners want to be supported to feel like they are important members of research teams. This support empowers them to feel confident to share their lived experiences and make suggestions and decisions about a research study. If patient partners believe their experiences and knowledge were not used or valued by academic researchers, then they may feel that their involvement was tokenistic. Tokenistic experiences discourage patient partners from participating in another research study. We conducted a rapid realist review of 62 international studies to explore what works (and does not work) in patient-oriented research. This methodology supported us to examine existing research and better understand what contexts, how and why patient-oriented research led to outcomes on a health care system. The goal of this type of research study is to develop and refine a program theory that identifies how actions and activities lead to outcomes. Our program theory emphasizes that patient partners need to trust the academic researchers they are working with. Several categories of actions (academic researcher’s behavior) helped researchers to gain the trust of their patient partners. Academic researchers were more (or less) likely to act in these ways depending on several contextual factors. Once patient partners trusted academic researchers on the team, they were empowered to draw upon their lived knowledge of health care systems and actively contribute as researchers. These findings are part of our complete theory about patient-oriented research impacts. They highlight why it is important to gain patient partners’ trust and how a complex set of actions are required by academic researchers to gain that trust.