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

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.

Patient partners' perspectives of meaningful engagement in synthesis reviews: A patient-oriented rapid review.

BACKGROUND: A growing literature describes promising practices for patient-oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective. DESIGN: The review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews. RESULTS: The literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient-related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour. CONCLUSION: Fostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits. PATIENT INVOLVEMENT: Patient partners were equal collaborators in all aspects of the review.

Developing a program theory of patient engagement in patient-oriented research and the impacts on the health care system: protocol for a rapid realist review.

BACKGROUND: The patient-oriented research (POR) discourse has been criticized as being fragmented, lacking consistent terminology and having few evaluative studies. Our research team will use rapid realist review methodology to generate broad, process-based program theory regarding how partnering patients with researchers in POR generates an impact within a health care system. METHODS: This protocol for a rapid realist review will involve multiple steps, including research question development; preliminary program theory and search strategy development; study selection and appraisal; data extraction, analysis and synthesis; and program theory refinement. We will be guided by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards for realist synthesis. Unlike traditional reviews, a realist review aims to discover and understand causal processes that exist within a complex environment, asking questions regarding what works for whom, under what circumstances, how and why. Our multidisciplinary team consists of patient partners, health care professionals, a health sciences librarian and health services researchers. Patient partners are full research partners, supporting development of our guiding research question and identifying community partners and stakeholder groups to disseminate our findings. Patient partners will be asked to recommend literature sources, to review and vet our set of search terms, and to review, evaluate and reflect on our initial program theory in light of their personal, lived expertise. INTERPRETATION: We will share the results of our rapid realist review with community partners and stakeholder groups. We will also disseminate our program theory by means of publication in a peer-reviewed journal and presentation at scientific conferences.

The Creation of a Tool to Measure Engagement in Patient-Oriented Research.

In 2017, the Saskatchewan Centre for Patient-Oriented Research (SCPOR) engaged patient and family advisors (PFAs) to review patient-oriented research grant proposals. The PFAs observed that the reviews would be less subjective if they were assessing the projects based on more rigorous criteria. Together the PFAs and SCPOR staff members developed a tool based on the Canadian Institutes of Health Research's Strategy for Patient-Oriented Research definition for patient-oriented research and the International Association for Public Participation's Spectrum of Public Participation. This article discusses the process of initiating a patient-identified project and co-creating the tool to indicate the level of patient-orientedness.