Community-Engaged Approaches for Minority Recruitment Into Clinical Research: A Scoping Review of the Literature

Wieland, Mark L.; Njeru, Jane W.; Alahdab, Fares; Doubeni, Chyke A.; Sia, Irene G.

doi:10.1016/j.mayocp.2020.03.028

Cited by 55 publications

(63 citation statements)

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“…Nevertheless, our findings as to challenges and benefits corroborate and align with existing research that participatory approaches can provide benefits particularly to the recruitment and retention of trial participants. [64][65][66][67] Challenges associated with participatory research that are previously reported and complementary to our findings often involve methodological challenges around collecting, interpreting and disseminating research. 64 66 We found, similar to previous reviews, that the extent of engagement and involvement of non-academic stakeholders is highly varied, and that research that is expressly participatory is often limited.…”

Section: Discussionsupporting

confidence: 66%

Participatory approaches in the development of health interventions for migrants: a systematic review

et al. 2021

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ObjectiveAnalysis of participatory approaches to developing health interventions for migrants and how approaches embody core participatory principles of inclusivity and democracy.DesignA systematic review of original articles. Electronic searches within the databases MEDLINE, Embase, Global Health and PsychINFO (from inception—November 2020).Eligibility criteria for study selectionOriginal peer-reviewed articles reporting research to develop and implement a health intervention for migrants, incorporating participatory approaches. We defined migrants as foreign-born individuals. Only articles reporting the full research cycle (inception, design, implementation, analysis, evaluation, dissemination) were included.Data extractionWe extracted information related to who was involved in research (migrants or other non-academic stakeholders), the research stage at which they were involved (inception, design, implementation, analysis, evaluation, dissemination), the method of their involvement and how this aligned with the core principles of participatory research—categorising studies as exhibiting active or pseudo (including proxy and indirect) participation.Results1793 publications were screened, of which 28 were included in our analysis. We found substantial variation in the application of participatory approaches in designing health interventions targeting migrants: across 168 individual research stages analysed across the 28 studies, we recorded 46 instances of active participation of migrants, 30 instances of proxy participation and 24 instances of indirect participation. All studies involved non-academic stakeholders in at least one stage of the research, only two studies exhibited evidence of active participation of migrants across all research stages. Evidence is limited due to the variability of terms and approaches used.ConclusionsImportant shortfalls in the meaningful inclusion of migrants in developing health interventions exist, suggesting a more rigorous and standardised approach is warranted to better define and deliver participatory research and improve quality.RegistrationThis review followed Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines and is registered on the Open Science Framework (osf.io/2bnz5).

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Section: Discussionsupporting

confidence: 66%

Participatory approaches in the development of health interventions for migrants: a systematic review

et al. 2021

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“…Other approaches include tabling (have a table in public locations staffed by racially concordant research staff to enroll patients), community outreach, and partnering with BIPOC community leaders and businesses, churches, and other community organizations. [11] While typically recommended to improve the enrollment of BIPOC populations in clinical trials, these approaches apply to trials that recruit participants directly and were not available to us and are generally less applicable to practice-based trials mediated by clinicians and healthcare services. For these trials, however, it may be more effective to modify trial funding and allocation of funds to speci c sites caring for BIPOC patients.…”

Section: Discussionmentioning

confidence: 99%

Enrolling People of Color to Evaluate a Practice Intervention: Lessons from the Shared Decision-Making for Atrial Fibrillation (SDM4AFib) Trial

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Gorr

Gravholt

et al. 2022

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Background: Trial recruitment of Black, indigenous, and people of color (BIPOC) is key for interventions that interact with socioeconomic factors and cultural norms, preferences, and values. We report on our experience enrolling BIPOC participants into a multicenter trial of a shared decision-making intervention about anticoagulation to prevent strokes, in patients with atrial fibrillation (AF). Methods: We enrolled patients with AF and their clinicians in 5 healthcare systems (three academic medical centers, an urban/suburban community medical center, and a safety-net inner-city medical center) located in three states (Minnesota, Alabama, and Mississippi) in the United States. Clinical encounters were randomized to usual care with or without a shared decision-making tool about anticoagulation. Analysis: We analyzed BIPOC patient enrollment by site, categorized reasons for non-enrollment, and examined how enrollment of BIPOC patients was promoted across sites.Results: Of 2247 patients assessed, 922 were enrolled of which 147 (16%) were BIPOC patients. In comparison to trial-eligible White participants, eligible Black participants more frequently did not enroll (102 (11%) vs. 185 (15%); p <.001). The rate of BIPOC patients enrollment varied substantially by site and was generally reflective of the population served at each participating site. Enrollment of BIPOC patients benefited most from including and prioritizing practices most likely to care for BIPOC patients, with lower yield from specific efforts to reach BIPOC clinic attendees and enrolling BIPOC patients first when possible. Conclusions: Enrollment from practices that have implemented policies that favor the care of BIPOC patients can contribute to generate trustworthy estimates of the effect of these interventions in clinical practice that are applicable to BIPOC populations. Best practices to optimize the enrollment of BIPOC participants into trials that examined complex and culturally sensitive interventions remain to be developed.Clinical trial registration: ClinicalTrials.gov (NCT02905032)

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“…Specifically, the FBOs, CBOs, and PHHS agencies were the focal point of the project. These organizations had the ability to integrate their knowledge of the local culture to maximize outreach efforts [ 23 ]. As a result, this eliminated the barrier of lack of trust that vulnerable populations have expressed concerning health research participation [ 15 , 16 , 23 ].…”

Section: Discussionmentioning

confidence: 99%

The Creation of a Program of Engagement and Outreach for COVID-19 Among African Americans Through Community-Academic Partnerships

et al. 2021

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The COVID-19 pandemic has disproportionately affected racial and ethnic minority groups in the U.S. Over a 7-week period in late 2020, with funding from the NC Office of Minority Health and Health Disparities, the West Greenville Health Council (WGHC), a community-academic, non-profit partnership, engaged and activated a 27-member organizational partnership network for COVID-19 health communication and personal protective equipment (PPE) distribution in African American communities in Eastern North Carolina. Outreach included: local production and dissemination of 10 culturally relevant safety videos, 10 risk, prevention, and safety postcard messages, 3 virtual forums, and PPE kit distribution via the network and their distribution venues. Communication mediums included social media posts (i.e., Facebook and YouTube), network email distribution lists, and postcards distributed along with PPE kits. Outreach activities were evaluated via an online survey, reach of social media posts, and PPE distribution. Working through the organizational network, the WGHC reached a combined total of 30,310 community members with educational materials. Forty-four outreach events were held during this period and over 8000 PPE kits were distributed. The online survey, distributed through the network, yielded more than 400 completed questionnaires. This tool was used to gain insights on community perceptions of COVID-19 safety barriers and media messages. The activation of the network as an approach for rapid response to an emerging public health crisis greatly expanded the reach of the WGHC. The WGHC is working to institutionalize the network to address future emerging health threats, as well as the dissemination of health information more generally.

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Community-Engaged Approaches for Minority Recruitment Into Clinical Research: A Scoping Review of the Literature

Cited by 55 publications

References 100 publications

Participatory approaches in the development of health interventions for migrants: a systematic review

Participatory approaches in the development of health interventions for migrants: a systematic review

Enrolling People of Color to Evaluate a Practice Intervention: Lessons from the Shared Decision-Making for Atrial Fibrillation (SDM4AFib) Trial

The Creation of a Program of Engagement and Outreach for COVID-19 Among African Americans Through Community-Academic Partnerships

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