Building Equitable Patient Partnerships during the COVID-19 Pandemic: Challenges and Key Considerations for Research and Policy

Sayani, Ambreen; Maybee, Alies; Manthorne, Jackie; Nicholson, Erika; Bloch, Gary; Parsons, Janet; Hwang, Stephen W.; Lofters, Aisha

doi:10.12927/hcpol.2021.26582

Cited by 20 publications

(36 citation statements)

References 12 publications

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“…While this has meant that some people have been able to provide input into the organization and delivery of healthcare, this opportunity has not been equally available to all patients. As Sayani et al (2021) clearly articulate, those who have had the opportunity to participate in this way have tended to be "white, well-educated and well-resourced" (p. 19), leading to a very narrow set of insights about patients' experiences with healthcare.…”

Section: Shifting From Patients To Communitiesmentioning

confidence: 99%

“…Through the extraordinary action of some individuals, the answer is, sometimes, yes. But as Sayani et al (2021) propose, the engagement of community perspectives over individual viewpoints enables a more robust approach to understanding and acting on peoples' perspectives of healthcare. Community engagement and partnership refers to a diverse collection of practices oriented toward involving community members in projects and services that affect them (Wallerstein et al 2017).…”

Section: Shifting From Patients To Communitiesmentioning

confidence: 99%

“…But the incisive analysis from Katz et al (2020) clearly shows that such labels create spaces that people will fill with their own assumptions about what makes people "vulnerable", "underserved", or "structurally marginalized". The vagueness of these terms might do more harm than good as echoed by Sayani et al (2021).…”

Section: Shifting From General To Specific Communitiesmentioning

confidence: 99%

“…It is also the outright risks to personal safety faced by Black, Indigenous and other Peoples of Colour during encounters with healthcare that must be addressed. In this context, Sayani et al (2021) emphasize that redressing these injustices in health systems requires the collaboration and leadership of those people who are the most affected by institutionalized forms of oppression. They clarify the importance of centring diverse patient perspectives in research and policy that is oriented toward enhancing health equity.…”

Section: Introductionmentioning

confidence: 99%

“…

In their insightful article, Sayani et al (2021) provide five considerations for developing patient partnerships that are meaningful and inclusive. In this brief rejoinder, we outline three points that push the boundaries of the discussion on diverse patient partnerships and represent challenges faced by our own research team as we aim to build and deepen our approach to community engagement.

…”

mentioning

confidence: 99%

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Commentary: Community Knowledge for Equity in Healthcare

Shaw

Sky

Chandra

2021

hcpol

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In their insightful article, Sayani et al. (2021) provide five considerations for developing patient partnerships that are meaningful and inclusive. In this brief rejoinder, we outline three points that push the boundaries of the discussion on diverse patient partnerships and represent challenges faced by our own research team as we aim to build and deepen our approach to community engagement. Firstly, we suggest a shift from patient engagement to community engagement; secondly, we propose a shift from engaging various communities together by labelling them as "underserved" or "structurally marginalized" to engaging specific cultural or geographic communities at specific times; and finally, we suggest deferring to community knowledge.

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Section: Shifting From Patients To Communitiesmentioning

confidence: 99%

Section: Shifting From Patients To Communitiesmentioning

confidence: 99%

Section: Shifting From General To Specific Communitiesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…

…”

mentioning

confidence: 99%

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Commentary: Community Knowledge for Equity in Healthcare

Shaw

Sky

Chandra

2021

hcpol

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At the intersection of trust and mistrust: A qualitative analysis of motivators and barriers to research participation at a safety‐net hospital

Tamlyn

Tjilos

Bosch

et al. 2023

Health Expectations

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Introduction The underrepresentation of Black, Indigenous, and People of Color (BIPOC) individuals in healthcare research limits generalizability and contributes to healthcare inequities. Existing barriers and attitudes toward research participation must be addressed to increase the representation of safety net and other underserved populations. Methods We conducted semi‐structured qualitative interviews with patients at an urban safety net hospital, focusing on facilitators, barriers, motivators, and preferences for research participation. We conducted direct content analysis guided by an implementation framework and used rapid analysis methods to generate final themes. Results We completed 38 interviews and identified six major themes related to preferences for engagement in research participation: (1) wide variation in research recruitment preferences; (2) logistical complexity negatively impacts willingness to participate; (3) risk contributes to hesitation toward research participation; (4) personal/community benefit, interest in study topic, and compensation serve as motivators for research participation; (5) continued participation despite reported shortcomings of informed consent process; and (6) mistrust could be overcome by relationship or credibility of information sources. Conclusion Despite barriers to participation in research studies among safety‐net populations, there are also facilitators that can be implemented to increase knowledge and comprehension, ease of participation, and willingness to join research studies. Study teams should vary recruitment and participation methods to ensure equal access to research opportunities. Patient/Public Contribution Our analysis methods and study progress were presented to individuals within the Boston Medical Center healthcare system. Through this process community engagement specialists, clinical experts, research directors, and others with significant experience working with safety‐net populations supported data interpretation and provided recommendations for action following the dissemination of data.

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Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis

Sheikhan

Kuluski

McKee

et al. 2023

Health Expectations

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BackgroundThere is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research.MethodsA scoping review of three databases and thematic analysis were conducted. Sixty‐one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included.ResultsKey topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed.ConclusionEngaging PWLE—from consultation to co‐creation throughout the research cycle—is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science.Patient or Public ContributionPWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write‐up phase.

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Building Equitable Patient Partnerships during the COVID-19 Pandemic: Challenges and Key Considerations for Research and Policy

Abstract: services research and public health policy to take steps to include a diverse representation of patient voices through equity-focused PE.

Cited by 20 publications

References 12 publications

Commentary: Community Knowledge for Equity in Healthcare

Commentary: Community Knowledge for Equity in Healthcare

At the intersection of trust and mistrust: A qualitative analysis of motivators and barriers to research participation at a safety‐net hospital

Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis

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