Rafiki Coalition

Community engagement is essential for shaping equitable biomedical research priorities, but it is often underutilized, especially for marginalized populations. To integrate community feedback from the public into research, herein we describe a collaborative pilot funded by the Chan Zuckerberg Initiative which pairs the University of California San Francisco (UCSF) with the Rafiki Coalition for Health and Wellness. Utilizing focus groups modeled on Research Prioritization by Affected Communities, participants identified themes that included mistrust in healthcare, representation gaps, and the need for culturally responsive research. Priorities such as mental health, chronic disease, and access to black providers were highlighted. The findings emphasize the need for sustained, grassroots partnerships to drive inclusive research agendas.

Transgender and gender nonbinary (TNB) people have been disproportionately affected by HIV and the COVID-19 pandemic. This study explored the prevalence of HIV prevention and treatment (HPT) interruptions during the pandemic and identified factors associated with these interruptions. Data were drawn from LITE Connect, a US-based, nationwide, online, self-administered survey designed to examine the experiences of TNB adults during the COVID-19 pandemic. A convenience sample of 2134 participants were recruited between June 14, 2021, and May 1, 2022. The analytic sample was restricted to participants taking antiretroviral medications to prevent or treat HIV before the onset of the pandemic (n = 153). We calculated descriptive statistics as well as Pearson χ 2 bivariate tests and multivariable models to identify factors associated with HPT interruptions during the pandemic. Thirty-nine percent of participants experienced an HPT interruption. We found a lower odds of HPT interruptions among participants living with HIV [adjusted odds ratios (aOR) 0.45; 95% Confidence Intervals (CI): 0.22, 0.92; P = 0.02] and essential workers [aOR 0.49; 95% CI: 0.23, 1.0; P = 0.06] and higher odds among people with chronic mental health conditions [aOR 2.6; 95% CI: 1.1, 6.2; P = 0.03]. When sex and education were included, we found a lower odds of interruptions among people with higher education. CI widened, but the magnitude and direction of effects did not change for the other variables. Focused strategies to address longstanding psychosocial and structural inequities are needed to mitigate HPT treatment interruptions in TNB people and prevent similar challenges during future pandemics.

The unintended pregnancy framework, a central tenet of sexual and reproductive health care delivery and research, has been depicted as an adverse outcome that should be prevented. There is growing criticism of the inadequacies of this framework, although little modification in public health guidelines, measurement, or clinical practice has been seen. This article critically reviews the literature on unintended pregnancy to encourage reflection on how this framework has negatively influenced practice and to inspire the advancement of more patient-centered care approaches. We begin by outlining the historical origins of the unintended pregnancy framework and review how this framework mischaracterizes patients' lived experiences, fails to account for structural inequities, contributes to stigma, and is built upon weakly supported claims of a negative impact on health outcomes. We close with a discussion of the relationship between health care provision and unintended pregnancy care and the implications and recommendations for realigning clinical practice, research, and policy goals.

BackgroundCommunities of color have been disproportionately impacted by COVID-19. We explored barriers and facilitators to COVID-19 vaccine uptake among African American, Latinx, and African immigrant communities in Washington, DC.MethodsA total of 76 individuals participated in qualitative interviews and focus groups, and 208 individuals from communities of color participated in an online crowdsourcing contest.ResultsFindings documented a lack of sufficient, accurate information about COVID-19 vaccines and questions about the science. African American and African immigrant participants spoke about the deeply rooted historical underpinnings to their community’s vaccine hesitancy, citing the prior and ongoing mistreatment of people of color by the medical community. Latinx and African immigrant participants highlighted how limited accessibility played an important role in the slow uptake of COVID-19 vaccines in their communities. Connectedness and solidarity were found to be key assets that can be drawn upon through community-driven responses to address social-structural challenges to COVID-19 related vaccine uptake.ConclusionsThe historic and ongoing socio-economic context and realities of communities of color must be understood and respected to inform community-based health communication messaging to support vaccine equity for COVID-19 and other infectious diseases.

Background: Rigid protocols can hamper translation of evidence-based interventions from research to real-world settings. This investigation aimed to develop procedures for modifying the study protocol of a community-based participatory research (CBPR) project and to analyze the theoretical constructs that underlie this process. Methods: The research project is a dissemination and implementation study of the Educational Program to Increase Colorectal Cancer Screening (EPICS), an evidence-based intervention targeting African Americans in the United States. The study is being conducted in a partnership with community coalitions in 15 different cities. Each site initially presented unique issues that required modification of the study protocol. Results: In order to honor underlying CBPR theory, it was necessary to negotiate protocol changes with the community coalition at each site, while insuring preservation of the core elements of the intervention. Conclusions: We discuss the ways in which this represents a narrowing of the gap between CBPR and traditional research approaches. Keywords: Community-based participatory research, colorectal cancer screening, evidence-based intervention, implementation and dissemination, sustainability

Reprenant le concept d’invention des traditions, Florence Bergeaud-Blackler montre comment la norme halal s’est construite au cours du temps et comment elle est devenue un instrument politico-religieux dans les mains des fondamentalistes musulmans, sur fond d’une lutte d’influence que se livrent l’Iran et l’Arabie Saoudite. En diaspora, la maitrise du halal est aujourd’hui « un enjeu dans la course a la representativite et dans l’affirmation de l’autorite religieuse » (p. 247). Mais cette nor...

This study aimed to identify community-level actions to decrease racial disparities in infant mortality (IM). Six urban multidisciplinary teams generated ideas for decreasing racial disparities in IM using a mixed methods concept mapping approach. Participants rated each idea as to its necessity and action potential and grouped ideas by theme. A cluster analysis produced a series of visual representations, showing relationships between the identified actions and the clustering of actions into themes. Multidimensional scaling techniques were used to produce analyses describing the necessity of and action potential for implementing the proposed ideas. Participants identified actions communities could take to decrease racial disparities in IM and suggested applications of the knowledge gained from the mapping process. Participants produced a total of 128 actions, within 11 thematic clusters, for decreasing racial disparities in IM. The thematic clusters contained a range of elements designed to promote knowledge and understanding of the relationship between health and racism; improve educational systems and community opportunities; facilitate community-driven health promotion, marketing, and research; improve health services for women; address physical and social environments that impact community health; prioritize resource allocation of community-based services; institutionalize strategies that promote equity across all systems; and create and support legislation and policies that address social determinants of health. Correlation coefficients of the clusters ranged from 0.17 to 0.90. Average necessity ratings ranged from 2.17 to 3.73; average action potential ratings ranged from 1.64 to 3.61. Findings suggest that thematic clusters with high action potential usually represented ongoing community activities or actions communities could easily initiate. Community size, existing programs, partnerships, policies, and influential advocates were among the factors cited affecting feasibility of implementation. Clusters with lower action potential require broader, longer term, policy, institutional or system-wide changes, and significant resources. High necessity clusters often contained actions perceived as essential for change, but sometimes outside of a community's control. Participants identified a number of practical actions that were considered to hold potential for individual, community, and institutional changes which could result in decreasing racial disparities in IM.