Dataset Information

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.

ABSTRACT:

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.

SUBMITTER: Zibrowski E

PROVIDER: S-EPMC7641165 | biostudies-literature | 2020 Jul-Sep

REPOSITORIES: biostudies-literature

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Publications

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.

Zibrowski Elaine E McDonald Shelagh S Thiessen Heather H VanDusen Ray R Boden Catherine C Carr Tracey T Goodridge Donna D Haver Charlene C Marciniuk Darcy D Stobart Christine C Verrall Tanya T Groot Gary G

CMAJ open 20200701 3

<h4>Background</h4>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.<h4>Methods</h4>This protocol for a rapid realist review will involve multiple steps, including research question ...[more]

PMID: 32873581

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Project description:BackgroundLittle is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study.MethodsParticipants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach.ResultsTwenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities.ConclusionOur findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.

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Project description:Introduction: Community engagement is increasingly recognized as a critical aspect of global health. Recent years have seen an expansion of community engagement activities linked to health research, but debates and inconsistencies remain about the aims of different types of engagement, mechanisms underpinning their implementation and impact, and influential contextual factors. Greater commitment to and consistency around community engagement by health research programs, implementers and funders requires a more coherent evidence base. This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts. Given the breadth and diversity of the literature on community engagement in health research, the review will initially focus on malaria research in low- and middle-income countries (LMICs) and draw on wider global health literature where needed. Methods and analysis: Community engagement in practice is often a complex set of interventions. We will conduct a realist review - a theory driven approach to evidence synthesis - to provide explanations for how and why community engagement with health research produces the pattern of outcomes observed across different contexts of application. We will consolidate evidence from a range of documents, including qualitative, quantitative and mixed method studies. The review will follow several stages: devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesizing and refining the programme theory, and reiteration of these steps as needed. Ethics and dissemination: A formal ethics review is not required for this literature review. Findings will be disseminated in a peer reviewed journal, through national and international conferences, and through a set of short briefings tailored for audiences with an interest in community engagement. Outputs and presentations will be informed by and feed into our network of community engagement experts. PROSPERO registration number: CRD42019125687.

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Dataset Information

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

Methods

Interpretation

Publications

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.

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