Building a “Deep Fund of Good Will”: Reframing Research Engagement

Passmore, Susan Racine; Fryer, Craig S.; Butler, James P.; Garza, Mary A.; Thomas, Stephen B.; Quinn, Sandra Crouse

doi:10.1353/hpu.2016.0070

Cited by 11 publications

(9 citation statements)

References 41 publications

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“…Although a few groups have long focused on the science surrounding research access, inclusion, and participation [[53], [54], [55], [56], [57], [58]], we found that recruitment science, as applied to ADRD research engagement, reflects a field in early stages of development, with many creative approaches being adopted to broaden inclusivity. While the present article presents a systematic review of existing evidence, it is possible that additional relevant reports would have been identified through inclusion of more databases, and because of inconsistent reporting surrounding ethnicity, it is unclear how well included studies characterized heterogeneous racial/ethnic populations.…”

Section: Discussionmentioning

confidence: 92%

Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

Gilmore‐Bykovskyi

Jin

Gleason

et al. 2019

A&D Transl Res & Clin Interv

201

166

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Introduction Alzheimer's disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research. Methods We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants' perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality. Results We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low. Discussion Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity.

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Section: Discussionmentioning

confidence: 92%

Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

Gilmore‐Bykovskyi

Jin

Gleason

et al. 2019

A&D Transl Res & Clin Interv

201

166

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“…Nevertheless, we highlight (1) overall feedback from the scholars Translational research and health equity 1. Building trust between minorities and researchers: presentation on how the social and historical context affects the research interaction between potential participants and researchers [16][17][18][19] 2. Translational research across the color line: the conceptual framework of 3 generations of health disparities research is examined to understand (a) data trends, (b) factors driving disparities, and (c) solutions for closing the gap.…”

Section: Resultsmentioning

confidence: 99%

The Health Equity Leadership Institute (HELI): Developing workforce capacity for health disparities research

Butler

Fryer

Ward³

et al. 2017

J. Clin. Trans. Sci.

Self Cite

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IntroductionEfforts to address health disparities and achieve health equity are critically dependent on the development of a diverse research workforce. However, many researchers from underrepresented backgrounds face challenges in advancing their careers, securing independent funding, and finding the mentorship needed to expand their research.MethodsFaculty from the University of Maryland at College Park and the University of Wisconsin-Madison developed and evaluated an intensive week-long research and career-development institute—the Health Equity Leadership Institute (HELI)—with the goal of increasing the number of underrepresented scholars who can sustain their ongoing commitment to health equity research.ResultsIn 2010-2016, HELI brought 145 diverse scholars (78% from an underrepresented background; 81% female) together to engage with each other and learn from supportive faculty. Overall, scholar feedback was highly positive on all survey items, with average agreement ratings of 4.45-4.84 based on a 5-point Likert scale. Eighty-five percent of scholars remain in academic positions. In the first three cohorts, 73% of HELI participants have been promoted and 23% have secured independent federal funding.ConclusionsHELI includes an evidence-based curriculum to develop a diverse workforce for health equity research. For those institutions interested in implementing such an institute to develop and support underrepresented early stage investigators, a resource toolbox is provided.

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“…This can include, for example, attending social events, providing services at a local organization, or assisting in community projects. Through this, community members have opportunities to learn first-hand about the researchers themselves, including their shared values with community members, as well as about their research interests and projects (Passmore et al, 2016). In time, these interactions can facilitate a community-engaged research planning process.…”

Section: > > Discussionmentioning

confidence: 99%

Recommendations From Black Sexual Minority Men: Building Trust to Improve Engagement and Impact of HIV/STI Research

Grieb¹,

Jackman²,

Tilchin³

et al. 2020

Health Promotion Practice

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As demonstrated by the consistently documented disproportionately high rates of HIV and STIs (sexually transmitted infections) among Black sexual minority men (BSMM), current efforts to develop responsive interventions to reduce HIV and other STIs within this population have not been sufficient. It is therefore critical that public health researchers reflect meaningfully on the ways in which they investigate HIV and STIs. Engagement with BSMM is crucial in addressing the disproportionately high rates of HIV and STIs experienced, and thus the goal of the current research was to identify community-developed strategies that may enhance community engagement in research with BSMM. Seven focus groups ( N = 38) were held with cisgender BSMM ages 18 to 45 years in Baltimore, Maryland to explore how to better engage this population and improve HIV and STI research. Data analysis of the text was conducted using an iterative, thematic constant comparison process informed by grounded theory. Four distinct themes related to trust-building within the broader community emerged: (1) authentic engagement with the community, (2) increased transparency of the research process, (3) capacity building of research staff from the community, and (4) a balance of research and action. Strategies for researchers to build community trust were identified that are related to, but slightly distinct from, common discussions in the community engaged research literature that are centered more specifically on trust-building within community–academic partnerships. Engagement with BSMM is crucial in addressing HIV and STI health disparities. It is critical that community engagement also be a priority to policy makers, research institutions, and funding institutions.

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Building a “Deep Fund of Good Will”: Reframing Research Engagement

Cited by 11 publications

References 41 publications

Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

The Health Equity Leadership Institute (HELI): Developing workforce capacity for health disparities research

Recommendations From Black Sexual Minority Men: Building Trust to Improve Engagement and Impact of HIV/STI Research

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