Conceptualizing and Measuring Trust, Mistrust, and Distrust: Implications for Advancing Health Equity and Building Trustworthiness

Annual Review of Public Health, Journal Year: 2023, Volume and Issue: 45(1), P. 465 - 484

Published: Dec. 15, 2023

Trust is vital to public confidence in health and science, yet there no consensus on the most useful way conceptualize, define, measure, or intervene trust its related constructs (e.g., mistrust, distrust, trustworthiness). In this review, we synthesize literature from wide-ranging field that has conceptual roots racism, marginalization, other forms of oppression. We summarize key definitions frameworks offer guidance scholars aiming measure these constructs. also review how trust-related are associated with outcomes, describe interventions field, provide recommendations for building institutional trustworthiness advancing equity. ultimately call future efforts focus improving professionals, scientists, care providers, systems instead increase entities as they currently exist behave.

Language: Английский

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Health system community partnership to design an online resource to address perinatal information needs for Black families: Action research study (Preprint)

Published: Jan. 17, 2025

We aimed to design an online resource hub provide information support timely access care and resources improve perinatal health outcomes for Black families in Mecklenburg County, the largest metropolitan area North Carolina. Methods: used iterative community-informed process, including community member focus groups organizational partner meetings, develop refine layout content of informational website. conducted during 2022 2023 with mothers (n=14) who had given birth prior two years or were pregnant. A semi-structured interview guide explored participant perspectives on: (i) that would be most helpful period; (ii) website usability content; (iii) appropriateness imagery topics; (iv) effective dissemination strategies. In addition, research team met regularly a multisector group get feedback on iterations solicit include. All was reviewed literacy. Focus participants recruited through local clinics partnering community-based organizations. Participants ranged age from 17 38. Our included individuals representing public health, patients, providers, social services, system leaders. The RE-AIM framework evaluation. Key themes areas included: vetted presented lay terminology, tools identify local, affordable, culturally competent care; related week-to-week changes they could expect pregnancy; alternative birthing options. common suggestions improvement navigation, amount text, color scheme, use images. final Birthing Connections provides educational informative every stage journey, preconception childcare, links address healthcare needs. twenty-seven downloadable infographics highlighted key graphically engaging format. Results outreach marketing efforts increase awareness within broad reach. Moreover, discussions revealed feel addresses important needs families. Partnership members enabled tailored tool providing educate empower Ongoing maintenance may help inequities outcomes.

Language: Английский

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Learning through Collaboration

Metropolitan Universities, Journal Year: 2024, Volume and Issue: 35(2)

Published: July 23, 2024

This article highlights the nascent efforts between College Unbound, Brown University, and Providence College—three very different types of institutions in Providence, Rhode Island—to foster cross-institutional capacity for place-based community engagement. By collectively engaging our institutions, we experimented with what collaboration around engagement might look like within local context. In this article, share approach reflections working to cultivate a that centers community, along limitations, lessons learned, next steps. Through efforts, situate collaborations as an opportunity more sustained, collaborative, transformative work higher education

Language: Английский

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Building healthy populations one community at a time

Nature Medicine, Journal Year: 2023, Volume and Issue: 29(7), P. 1601 - 1604

Published: July 1, 2023

Language: Английский

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Using Community-Partnered Participatory Research to Value the “Community Lens” and Promote Equity in Community–Academic Partnerships

Health Equity, Journal Year: 2023, Volume and Issue: 7(1), P. 543 - 554

Published: Sept. 1, 2023

Background: Community input is crucial for identifying characteristics necessary equitable, sustainable community–academic partnerships (CAPs). A November 2021 conference, honoring the late Dr. Loretta Jones and Community-Partnered Participatory Research (CPPR) model, was held to gather designing a learning institute community members as co-equal partners with academics in research, program, policy initiatives. This created an opportunity explore attendees' perspectives on challenges opportunities related CAPs special focus promoting equity. Methods: Institutional Review Board approval obtained. Five break-out discussion group sessions were conducted co-facilitated by both academic leader. After consent, discussions recorded transcribed. An iterative procedure collaborative-group-thematic-analysis developed. The six-phase process included rigorous coding, discussion, comparison of data data, development refinement themes subthemes. Results: total 38 racial-ethnically diverse participants volunteered from conference audience 62 various sectors including community-based organizations, health care, social services, academia, or within Los Angeles County. Analysis led three themes: Being cautious extractive tendency academia need anti-racism CAPs; Leveraging power resist top-down lens academia; bridging two worlds through equitably structured table. Discussion: Participants described optimism about future uses CPPR enhance CAPs, address barriers equitable owing unequal contexts entrenched dynamics. Implications include addressing racism, evaluating financial equity promote accountability, mentoring leaders Conclusion: Use "community lens" developing sustainable, accountability responsibly implement authentic CPPR.

Language: Английский

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A novel approach to research engagement: Developing a targeted theory of change with Black and African-American stakeholders

Journal of Clinical and Translational Science, Journal Year: 2024, Volume and Issue: 8(1)

Published: Jan. 1, 2024

Abstract Purpose: Community inclusion in research may increase the quality and relevance of research, but doing so an equitable way is complex. Novel approaches used to build engagement with historically marginalized communities other sectors have clinical sector. Method: To address long-standing gaps challenges, a stakeholder group was convened develop theory change (ToC), structured method for obtaining input from stakeholders enhance design, conduct, dissemination research. The group, comprised Black residents within metropolitan area, followed monthly meeting schedule 12 months produce outcome map, model that formally defines aspects this community. Results: Stakeholders reported significant improvements trust over 12-month period, not changes health empowerment (individual, organizational, or community level). Through convening process, ToC map were developed focus building bidirectional relationships between groups identifying as Black, Indigenous, People Color (BIPOC) researchers Boston, MA. Additionally, ownership guidelines adhere when utilizing BIPOC communities. Conclusion: Co-ownership models members, such advance further value reach community-based participatory while increasing levels

Language: Английский

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The promise and challenges of multi-cancer early detection assays for reducing cancer disparities

Frontiers in Oncology, Journal Year: 2024, Volume and Issue: 14

Published: March 8, 2024

Since improvements in cancer screening, diagnosis, and therapeutics, disparities have existed. Marginalized populations (e.g., racial ethnic minorities, sexual gender lower-income individuals, those living rural areas, persons with disabilities) worse cancer-related outcomes. Early detection of substantially improves outcomes, yet uptake recommended screenings varies widely. Multi-cancer early (MCED) tests use biomarkers the blood to detect two or more cancers a single assay. These assays show potential for population screening some cancers—including disproportionally affecting marginalized communities. MCEDs may also reduce access barriers detection, primary factor outcome disparities. However, promise be realized, during their development testing, we are obligated cautious design them way that reduces myriad structural, systematic, personal contributing Further, they must not create new barriers. Population studies clinical trials should include diverse populations, work equally well all populations. The affordable. It is critical establish trust within communities, healthcare system, MCED themselves. Tests expected high specificity, as positive finding will trigger additional, oftentimes invasive expensive, imaging other diagnosis and/or biopsies. Finally, there help individuals test navigate system follow-up diagnostics treatment, if warranted, accessible all.

Language: Английский

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Guiding Principles for Patient and Public Engagement in the Educational Missions of Medical Schools

Academic Medicine, Journal Year: 2024, Volume and Issue: 99(9), P. 1016 - 1023

Published: April 3, 2024

Abstract Purpose The purpose of this research was to cocreate with patients and the public a set evidence-informed guiding principles for their authentic, responsive, ongoing, sustainable engagement in mission, goals, curriculum, delivery medical education. Method A relevance education identified from literature. Eight focus groups community members representing wide variety perspectives were conducted April May 2022. Participants reviewed, prioritized, discussed described successful engagement, resulting 8 priority order. summary report circulated participants feedback. reviewed endorsed by senior leaders school. Results attended 38 people (age range, mid-20s postretirement; 7 male, 27 female, 4 unknown gender). Accountability (19%), inclusion (18%), reciprocity (17%), partnership shared decision-making (14%) chosen as most important principles. want evidence that contributions are valued have made difference. They school include support diversity reflect populations being served health care system. invest building trusting respectful long-term relationships public. Conclusions could be used schools starting point build local communities increase authentic educational mission

Language: Английский

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Towards anti-racist futures: a scoping review exploring educational interventions that address systemic racism in post graduate medical education

Advances in Health Sciences Education, Journal Year: 2024, Volume and Issue: unknown

Published: June 14, 2024

Abstract Since 2020, brought to the forefront by movements such as Black Lives Matter and Idle No More, it has been widely acknowledged that systemic racism contributes racially differentiated health outcomes. Health professional educators have called address disparities within healthcare, policy, practice. To tackle structural one avenue emerged is creation of medical education interventions postgraduate residency programming. The objective this scoping review examine current literature on anti-racist educational interventions, integrate a or view racism, education. Through identification analysis 23 papers, identified three major components interest across including (a) conceptualization, (b) pedagogical issues, (c) outcomes & evaluation. There were overlapping points discussion each these components. Conceptualization addressed how researchers conceptualized in different ways, range curricular content chose challenge absence community’s role development. Pedagogical issues knowledge vs. skills-based teaching, tensions between one-time workshops integrative curriculum. Outcomes evaluation highlighted self-reported Likert scales dominant types evaluation, self-evaluation misalignments intervention learning objectives. findings are unique their in-depth exploration programming, specifically relation efforts racism. contribute meaningful state field generate new conversations about future possibilities for broader professions

Language: Английский

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“Do they REALLY trust us”?: Lessons from a volunteer research registry

Journal of Clinical and Translational Science, Journal Year: 2024, Volume and Issue: 8(1)

Published: Jan. 1, 2024

Abstract Background: All IN for Health is a well-established community-academic partnership dedicated to helping improve the lives of Indiana residents by increasing health research literacy and promoting resources, as well opportunities participate in research. It sponsored Clinical Translational Science Institute (I-CTSI). The study’s purpose was measure trust biomedical healthcare organizations among volunteers. Methods: Relationship Trust Research Engagement (RTRE) survey developed utilizing 3 validated scales. RTRE consisted 36 items 5-point Likert scale with three open-text questions. We conducted focus groups total 24 individuals ahead survey’s launch. Recruitment done through newsletter. administered summer 2022. Results: Six hundred sixty-three participated survey. Forty-one percent agreed that doctors do medical selfish reasons. Moreover, 50% disagree patients get same treatment regardless race/ethnicity. Sixty-seven think it safe research, yet 79% had never been asked participate. Ten believe researchers select minorities their most dangerous studies expose minoritized diseases. Conclusion: utilization tools will facilitate participant recruitment assist institutions investigators alike accountability. imperative, we work toward understanding our communities’ assessing own trustworthiness, critically reflect on authenticity efforts.

Language: Английский

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