Background: Patient-oriented research affords individuals with opportunities to genuinely contribute to health care research as members of research teams. While checklists and frameworks can support academic researchers' awareness of patient engagement methods, less guidance appears available to support their understanding of how to develop and maintain collaborative relationships with their patient partners. This knowledge is essential as patient partners report that the social atmospheres of research teams significantly impacts the quality of their experiences. This study sought to develop theory regarding how academic researchers support and sustain patient engagement in patient-oriented research.
Methods: A six-step, rapid realist review was conducted: (1) research question development, (2) preliminary theory development, (3) search strategy development; (4) study selection and appraisal, (4) data extraction, analysis and synthesis (5) identification of relevant formal theories, and (6) theory refinement with stakeholders. Findings were additionally distilled by collective competence theory.
Results: A program theory was developed from 62 international studies which illuminated mechanisms supporting academic researchers to engage patient partners, contexts supporting these mechanisms, and resources that enabled mechanism activation. Interaction between seven contexts (patient-oriented research belief, prior interaction with a healthcare system, prior interaction with a particular academic researcher, educational background of patient partner, prior experience with patient-oriented research, study type, and time lived in a rural-urban setting) and seven mechanisms (deciding to become involved in patient-oriented research, recognizing valuable experiential knowledge, cultural competence, reducing power differentials, respectful team environment, supporting patient partners to feel valued, and readiness to research) resulted in an intermediate outcome (sense of trust). Trust then acted as an eighth mechanism which triggered the final-level outcome (empowered patient-centred lens).
Conclusions: Our theory posits that if patient partners trust they are a member of a supportive team working alongside academic researchers who authentically want to incorporate their input, then they are empowered to draw upon their experiential knowledge of health care systems and contribute as researchers in patient-oriented research. Our theory extends conceptual thinking regarding the importance of trust on patient-oriented research teams, how patient partners' trust is shaped by team interactions, and the role that academic researchers have within those interactions.
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.
© 2021. The Author(s).