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

Abstract

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.

The impact of COVID‐19 on patient engagement in the health system: Results from a Pan‐Canadian survey of patient, family and caregiver partners

“…It is acknowledged that many individuals who become patient, family and caregiver partners do so because of a negative interaction with the health system that they want to improve for others 20,21 . As a result, they may enter their patient partner roles with some mistrust in the health system, which their patient engagement activities may help to repair over time.…”

“…It is acknowledged that many individuals who become patient, family and caregiver partners do so because of a negative interaction with the health system that they want to improve for others. 20 , 21 As a result, they may enter their patient partner roles with some mistrust in the health system, which their patient engagement activities may help to repair over time. The fact that nearly a quarter of patient, family and caregiver partners felt excluded during a time when they felt that their contributions were as, if not more, important than ever is especially problematic given this context.…”

Engaging with patients in research on knowledge translation/implementation science methods: a self study

“…Involving patients and the public in health services and clinical research is increasingly important as a factor in delivering high quality research that is meaningful to those it may impact most [ 1 – 4 ]. Patient-oriented research (POR) engages patients and the public in all stages of the research process [ 1 , 2 ].…”

“…Recent research usefully articulates what constitutes meaningful patient engagement [ 12 ], ethical comportment in engaging with patients in research [ 13 ], lessons learned in patient-engaged research [ 14 ], social processes that academic researchers use to involve patients in POR [ 4 ], and competencies required by researchers and patients for POR [ 2 , 15 ]. Hamilton et al’s [ 12 ] Patient Engagement in Research Framework (PEIR Framework) characterizes meaningful patient engagement in research as including convenience, team interactions, supports, and feeling valued as elements that create a positive environment for patients within a research team.…”

“…Competencies and frameworks for POR teams are valuable and important, but do not address the temporal and processual realities of research team development and functioning that are necessary for teams to develop strengths and work through times of tension. Zibrowski et al [ 4 ], in their realist review of patient engagement in POR, outline mechanisms, largely connected to the research context, that enable academic researchers to develop trust, cultural competence, reduce power differentials, respectful team environments, and recognize experiential knowledge, support patients to feel valued, and ensure readiness to undertake research. Salazer et al [ 19 ] hold that research teams develop integrative capacity, that is the ability to overcome barriers created by different disciplines, knowledge, and backgrounds.…”