Ripple effects of a patient & health-system partnered engagement project: a co-developed protocol.

内容摘要

Engaging knowledge users, including patient partners and health-system partners, in embedded health services research is increasingly recognized as essential for strengthening the relevance of research and improving the quality and equity of health services and is foundational to the success of team science. Existing engagement frameworks, however, often capture experiences at single time points and do not fully reflect relational dimensions over time such as trust, reciprocity, shared decision-making, and equity which can impact the outputs and outcomes of partnered research. There remains limited evidence describing how engagement unfolds or what conditions support or hinder meaningful, equitable partnerships in research. This study will address this gap by examining the ripple effects of a long-standing researcher-knowledge user partnership and identifying the relational and structural factors that sustain it. This qualitative, participatory study will be guided by critical patient-oriented research (cPOR), an approach that centres equity, shares power, and structurally situates lived/living experiences throughout the research process. In alignment with cPOR principles, patient partners and health-system partners are co-researchers across all stages of the study from inception through to development of data collection tools and will partner in analysis and interpretation. The study will be conducted within the Lung Health Equity Advisory Committee, a partnership co-established to address inequities in lung health, where patient partners, clinicians, policymakers, program implementers, and researchers have worked together since 2020. Data collection will be informed by patient engagement tools, such as the Engaging with Purpose Patient Engagement Framework, to assess experiences across five pillars: Co-Build, Support, Mutual Respect, Inclusiveness, and Impact, using document analysis and annual surveys. Analysis will be guided by the theoretical concept of ripple effects, to explore how engagement processes, outputs, and outcomes accumulate and influence subsequent phases of work. Data will be analysed using combined deductive-inductive content analysis, with triangulation across all data sources. Preliminary findings will be synthesized with partners through Ripple Effects Mapping (REM), a participatory approach that supports collective interpretation, visualization of impact pathways, and opportunities for continuous improvement. This study offers a novel approach to understanding the experiences and impact of long-standing research-knowledge user partnerships that are not bound by a specific project or timeline. By exploring this relational approach to engagement, we will generate nuanced insights into how knowledge-user engagement is built, experienced, and adapted over time within an equity-oriented partnership. The exploration of ripple effects is expected to strengthen real-time learning and partnership dynamics while offering a transferable model for other research teams seeking to embed iterative, partner-guided improvement into engagement practices that are sustained over time. Working closely with patients, community members, and people who plan and deliver healthcare helps make research more useful and can improve the quality and fairness of care. However, most ways of exploring engagement practices capture people’s experiences as snapshots at different points in time, and do not adequately unpack how aspects such as trust, shared decision-making, and fairness may impact long-standing relationships. This study will help fill this gap by looking at how engagement is experienced over time in a long-standing partnership and by identifying the relationship and system factors that help support meaningful and impactful partnerships.This study will use an approach that focuses on equity, shared decision-making, and lived/living experiences. Patient partners and health-system partners who have been working together since 2020 in the Lung Health Equity Advisory Committee to improve lung health outcomes for all have co-designed this study and research approach. They will help analyse and understand the results. We will collect information from project documents and surveys and work together to create a ripple effects map that visually traces how engagement activities, relationships, and collective decision-making contribute to outcomes and development of novel projects over time.This study will help us better understand how sustained partnerships are built, experienced, and can be improved over time. It will also provide a model that other research teams can use to understand and sustain how they work with partners for greater impact.