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.
Plain language summary: We are a team of patient partners, health care providers, a health sciences librarian, health services researchers and professionals from a provincial research support centre in Saskatoon, Canada. As a team, we are trying to understand better how involving patients, family members, caregivers and other members of the public in research may lead to improving one or more aspects of health care systems. This protocol will guide the development of a rapid realist review, to locate existing patient-oriented research studies that have been published in scientific journals or have been communicated by governmentsponsored initiatives in Canada and internationally. Realist reviews focus on interpretation, critique and deepening of understanding regarding complex processes with the development of theory. From our set of located studies, we aim to develop a theory answering the following research question: "How, why, to what extent and in what contexts does patient-oriented research produce impacts on individual collaborators, research processes, communities and health care systems?" We plan to share what we learn about patientoriented research with other community partners, stakeholders, academic researchers and health care professionals. P atient-oriented research (POR) intervenes on the traditional research role of patients, family, caregivers and other members of the general public. 1 Patientoriented research recognizes that the personal health journeys of individuals enable them to develop lived expertise regarding health care systems. This lived expertise makes patients valuable members of a research team. 1 Patient-oriented research anticipates that partnering patients with researchers will enhance research quality and will "improve health care policies and practices across the system, ultimately improving health outcomes." 2The POR discourse has been described as being in a catch-22 paradox. 3 Information from reviews and prospective studies have highlighted POR's potential to improve
Background: despite the efforts of multiple stakeholders to promote appropriate care throughout the healthcare system, studies show that two out of three lower back pain (LBP) patients expect to receive imaging. We used the Choosing Wisely Canada patient-oriented framework, prioritizing patient engagement, to develop an intervention that addresses lower back pain imaging overuse. Methods: to develop this intervention, we collaborated with a multidisciplinary advisory team, including two patient partners with lower back pain, researchers, clinicians, healthcare administrators, and the Choosing Wisely Canada lead for Saskatchewan. For this qualitative study, data were collected through two advisory team meetings, two individual interviews with lower back pain patient partners, and three focus groups with lower back pain patient participants. A lower back pain prescription pad was developed as an outcome of these consultations. Results: participants reported a lack of interactive and informative communication was a significant barrier to receiving appropriate care. The most cited content information for inclusion in this intervention was treatments known to work, including physical activity, useful equipment, and reliable sources of educational material. Participants also suggested it was important that benefits and risks of imaging were explained on the pad. Three key themes derived from the data were also used to guide development of the intervention: (a) the role of imaging in LBP diagnosis; (b) the impact of the patient-physician relationship on LBP diagnosis and treatment; and (c) the lack of patient awareness of Choosing Wisely Canada and their recommendations. Conclusions: the lower back pain patient-developed prescription pad may help patients and clinicians engage in informed conversations and shared decision making that could support reduce unnecessary lower back pain imaging.
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