Missing Persons Alert: Finding the Lost “Person” in Patient-Oriented Research

Rao, Sandy

doi:10.1177/23743735221092628

Cited by 5 publications

(2 citation statements)

References 39 publications

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“…For example, an earlier survey indicated that patients’ experiences with implant services were mainly driven by decisions made by their implant team; 7 another study found that patients had not been given the opportunity to set their own goals or benchmarks 8 . Tellingly, in the latter study, the questionnaire used to interview patients about their rehabilitation was developed by researchers with no input from patients—even as patients consistently indicate their preference to be involved in research and care plans 9–12 …”

Section: Users Weigh Inmentioning

confidence: 99%

Cochlear Implant Users Describe Need for Lifelong Services

English,

Archbold,

Lamb

2024

The Hearing Journal

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Section: Users Weigh Inmentioning

confidence: 99%

Cochlear Implant Users Describe Need for Lifelong Services

English,

Archbold,

Lamb

2024

The Hearing Journal

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“…This misalignment risks turning a once-radical tool for societal transformation into a subtle form of control, thereby perpetuating the very dynamics it was created to dismantle. If the academic community does not actively uphold the emancipatory principles of participatory research, we risk diluting its potential as an agent of genuine change and reducing it to a tokenistic exercise [ 5 , 16 , 46 , 49 , 63 ].…”

Section: Introductionmentioning

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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The measure of meaning: redefining success in patient-oriented research

Rao,

Jardine,

Satam

et al. 2024

MHSI

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Purpose This manuscript aims to consider traditional success metrics in patient-oriented research (POR) using insights from the Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities (HEARTS) study. Design/methodology/approach Through collective reflexivity, this manuscript underscores the inadequacy of current evaluation standards that focus primarily on quantifiable outputs. Findings The findings suggest that significant systemic challenges persist, including ageism and discrimination, which undermine the efforts of POR. Practical implications This manuscript argues for an expanded evaluation encompassing traditional metrics and integrating emotional, experiential and community impact measures. Such an approach is crucial to capturing POR's comprehensive effects and fostering a research environment that values inclusivity, supports well-being and ensures responsive and equitable research practices. Thus, aligning with the transformative goals of POR, aiming to enhance the quality and impact of health research and reflect the profound personal and communal transformations that are as significant as the outcomes they facilitate. Originality/value This manuscript represents an emancipatory approach to POR, distinguished by its authentic co-authorship model. Uniquely, it is composed in collaboration with young adults who are experts in experience and coresearchers. These co-authors bring invaluable first-hand insights that both critique and enrich our understanding, enabling them to actively shape the discourse and direction of future POR research. This collaboration ensures the development of more relevant, grounded and transformative approaches in mental health research, thereby enhancing the pertinence and impact of these findings in real-world settings.

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Missing Persons Alert: Finding the Lost “Person” in Patient-Oriented Research

Cited by 5 publications

References 39 publications

Cochlear Implant Users Describe Need for Lifelong Services

Cochlear Implant Users Describe Need for Lifelong Services

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

The measure of meaning: redefining success in patient-oriented research

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