Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

Roché, Pauline; Shimmin, Carolyn; Hickes, Serena; Khan, M. Laeeq; Sherzoi, O.; Wicklund, Evan D.; Lavoie, Josée G.; Hardie, Samantha; Wittmeier, Kristy; Sibley, Kathryn M.

doi:10.1186/s40900-020-00217-2

Cited by 47 publications

(51 citation statements)

References 42 publications

(45 reference statements)

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“…Since this scoping review pointed to equity challenges in engaging in virtual care it will be important to place emphasis on addressing these barriers as we move into the COVID-19 recovery period. Further, equity challenges in participating in patient engagement activities extend beyond virtual care and can occur along the continuum of engagement; thus highlighting the importance of applying a health equity lens to engagement, which is reflexive, intersectional and trauma-informed [ 74 ].…”

Section: Discussionmentioning

confidence: 99%

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership

et al. 2021

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Background The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? Objective To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. Methods The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. Results Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. Conclusions Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

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Section: Discussionmentioning

confidence: 99%

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership

et al. 2021

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“…Issues of power dynamics in communication have been brought up by others doing research involving patients and consumers along with clinicians (Hewlett et al, 2006). As identified by these authors, it is vital to foster changes in the patient-clinician relationship to one of research partners, colleagues, and collaborators to maximize the benefit of the interactions and to use a social justice lens in building trust and relationships with advisors (Roche et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Inclusion of diverse patient stakeholders ensures that the research aims, design, and outcomes are relevant to a broader range of persons living with the condition and promote health equity. The Valuing All Voices Framework provides a social justice/health equity approach to engaging patients in research, particularly those who are marginalized (Roche et al, 2020). Viewing the experiential knowledge of patients as equally valuable to knowledge and expertise of health care professionals can minimize tokenism and promote a more meaningful exchange and better outcomes (Majid, 2020a(Majid, , 2020b.…”

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confidence: 99%

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Young

Miyamoto²,

Henderson

et al. 2020

West J Nurs Res

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Patient engagement in research improves trustworthiness of the research findings, increases relevance, and ensures designs include the most meaningful outcomes for patients living with targeted health conditions. The Patient Centered Outcomes Research Institute (PCORI) requires engagement of patient stakeholders. There is limited description of both the context and the processes used to engage patients effectively. This paper discusses engagement activities, roles and responsibilities, value of a Patient Advisory Board (PAB), and lessons learned. Data include program notes, research team reflections, PCORI reporting, and an advisor survey. Facilitators of meaningful engagement included creating a learning community, co-defining clear roles, reimbursing advisors, establishing clear avenues for communication, and welcoming unique contributions. Lessons learned were the value of time, the importance of building trust, and the benefits of diverse perspectives. The approach to meaningful engagement of patient advisors in research has the potential to enhance the relevance and usefulness of research for improving lives.

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“…There is strong evidence from the literature that some patient groups face more barriers than others to engage in research [ 25 , 27 ]. For instance, we know that women are overrepresented in the patient communities and more so in some health research areas than others (e.g.…”

Section: Methodsmentioning

confidence: 99%

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

et al. 2021

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Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: Building consensus on common evaluation criteria and indicators for PPE in research; Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

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Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

Cited by 47 publications

References 42 publications

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership

A scoping review of patient engagement activities during COVID-19: More consultation, less partnership

Meaningful Engagement of Patient Advisors in Research: Towards Mutually Beneficial Relationships

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

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