Empowering and Accelerating Impacts of Patient-Oriented Research

Gill, Peter; Urajnik, Diana; Ganann, Rebecca

doi:10.12927/hcq.2022.26781

Cited by 3 publications

(2 citation statements)

References 19 publications

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“…Hierarchical structures in research can create power imbalances that hinder equitable participation [11,17,18,26,32]. To address this, we introduce Shared Stewardship, a model that promotes a non-hierarchical, collaborative research environment.…”

Section: From Barriers To Breakthroughs: Young Adult Pares' Guide To Pormentioning

confidence: 99%

Primus Inter PARES: First among equals—practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES

Rao,

Dimitropoulos,

Jardine

et al. 2024

Res Involv Engagem

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Background This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures. Main Body The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them. Conclusion This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.

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Section: From Barriers To Breakthroughs: Young Adult Pares' Guide To Pormentioning

confidence: 99%

Primus Inter PARES: First among equals—practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES

Rao,

Dimitropoulos,

Jardine

et al. 2024

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…The common learnings across the EMPOWER research projects, including the importance of addressing health equity, being flexible in tackling new challenges and evaluating patient engagement, do not only apply to research. Furthermore, the application of integrated knowledge translation, as discussed in the Introduction (Gill et al 2022), can guide the broader spheres of healthcare policy and leadership, whereby end-users of the system are engaged in policy, strategy and governance to optimize system performance and achieve improvements in healthcare outcomes. In other words, while the focus of OSSU's EMPOWER Awards is patient-oriented research, what is highlighted in these articles extends well beyond that.…”

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confidence: 99%