Trust and Biomedical Research Engagement of Minority and Under-Represented Communities in Mississippi, USA.

Trust is critical to the development and maintenance of effective research collaborations and community engagement. The purpose of this study was to assess the current attitudes and level of trust pertaining to health research among residents of Central Mississippi, the priority health region for the Research Centers in Minority Institutions (RCMI) Center for Health Disparities Research (RCHDR) at Jackson State University. The cross-sectional study was conducted from November 2021 to April 2022. The data were analyzed using descriptive statistics carried out by SPSS statistical software. A total of 146 participants responded to the survey. The participants were predominately African American (99%) and female (75%). Historical research studies, the researchers' qualities, and potential benefits from participation were factors affecting the level of trust in the research process. Ninety percent (n = 131) expressed that it was important to be involved in the research process, and 98.5% (n = 144) agreed that discussing the research findings with the participants was important for establishing trust in the research process. While trust in the research process does not guarantee participation, trust is a precursor for those who decide to engage in health disparities research. Key findings will be integrated into the RCHDR research agenda to foster further development and implementation of innovative community-based participatory research toward the control and/or prevention of diseases that disproportionately affect minority and under-represented populations in Mississippi.

Operational and Management Structure of the Jackson Heart Study Community Outreach Center.

The authors identified the key characteristics of the Jackson Heart Study Community Outreach Center as it worked to embed a sustainable, positive impact on the surrounding communities by engaging community partners to facilitate the mission of the Jackson Heart Study. This report provides an overview of the practice and infrastructure.

Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study.

BACKGROUND: Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding. METHODS: We surveyed members of the JHS (Jackson Heart Study, n=960), the FHS (Framingham Heart Study; n=955), and African American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would want to receive the result. Data were analyzed separately by cohort using generalized linear mixed models. RESULTS: Response rates ranged from 67% to 73%. Across vignettes, 88% to 92% of respondents would definitely or probably want to learn the result. In multivariate analyses among JHS respondents, desire for results was associated with positive attitudes towards genetic testing, lower education, higher subjective numeracy, and younger age, but not with any of the 5 factors. Among FHS respondents, desire for results was associated with higher absolute risk, preventability, reproductive risk, and positive attitudes towards genetic testing. Among FHS Omni respondents, desire for results was associated with positive attitudes towards genetic testing and younger age. CONCLUSIONS: Most genetic research participants desire return of secondary genetic results. Several factors identified by expert panels as salient are associated with preferences among FHS, but not JHS or FHS Omni, participants.

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study (n = 960), Framingham Heart Study (n = 955), and Framingham Heart Study-Omni Cohort (n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3-5/5). Participants were also asked to select words to describe their attitudes toward genetics. More respondents endorsed the positive words "hopeful" (60%-70%), "optimistic" (44%-64%), "enthusiastic" (35%-43%), or "excited" (28%-30%) than the negative words "cautious" (35%-38%), "concerned" (25%-55%), "worried" (6%-13%), "pessimistic" (2%-5%), or "horrified" (1%-5%). Characteristics associated with favorable attitudes were greater genetics knowledge, higher subjective numeracy, experience with genetic testing, less frequent religious attendance, and not being employed. These findings demonstrate variation in attitudes even among participants in long-standing cohort studies, indicating a need for ongoing participant engagement and education.

Factors Affecting Dietary Practices in a Mississippi African American Community.

This study examined the practices, personal motivation, and barriers of African American communities in Mississippi regarding their dietary practices. We selected the Metro Jackson Area comprised of Hinds, Madison and Rankin Counties because it is a combination of urban and rural communities. The sample consisted of 70 participants from seven sites. A total of seven focus groups responded to six questions to assess practices, personal motivation, and barriers to dietary practices: (1) Where in your community can you access fresh fruits and vegetables? (2) How many meals a day should a person eat? (3) What would you consider to be a healthy breakfast, lunch and dinner? (4) What would you consider to be a healthy snack? (5) What do you consider to be your motivations for eating healthy? (6) What do you consider to be your barriers to eating healthy? Each of the seven focus groups consisted of 6 to 12 participants and provided details of their dietary practices. The focus group interviews were digitally-recorded. The recorded interviews were transcribed. The majority of the participants stated that there is a limited availability of fresh fruits/vegetables in rural areas because of a shortage of grocery stores. When they do find fruits, they are priced very high and are unaffordable. Even though health conditions dictate food frequency and portion size, community members feel that individuals should eat three good balanced meals per day with snacks, and they should adhere to small portion sizes. While the desire to attain overall good health and eliminate associative risks for heart disease (e.g., diabetes, obesity) are personal motivations, the cost of food, transportation, age, and time required for food preparation were seen as barriers to healthy eating. Decisions regarding meal choice and meal frequency can have an impact on long-term health outcomes. Health promotion programs should become an integral part of academic- community collaborative agreements.

Perception of Policy and Environmental Action to Promote Healthy Behaviors in African American Communities.

The present study aimed to examine the perceptions of African American communities regarding the involvement of political leaders in facilitating policy and environmental change promoting healthy eating and physical activity. We selected the Metro Jackson Area comprised of Hinds, Madison and Rankin Counties because it is a combination of urban and rural communities. The sample consisted of 70 participants from seven sites. A total of seven focus groups were asked to respond to one question to assess political leaders' involvement in healthy living: "When you think about your political leaders that you have in the Jackson, Mississippi area, do any of them promote healthy eating and physical activity?" Focus groups consisted of six to 12 participants and were asked to comment on their participation in physical activity. The focus group interviews were digitally recorded. The recorded interviews were transcribed by a professional transcriptionist. Community members could not recollect much participation from political leaders in the health prevention/intervention efforts. In each of the counties, there was evidence that there was some involvement by local politicians in health promotion issues, but not on a large scale. In conclusion, making healthy foods and products available in neighborhood stores has long been associated with healthy behaviors and positive health outcomes. This can make a difference in the Mississippi communities where supermarkets are not accessible and health disparities abound.

Introduction: Impacting the Social Determinants of Health through a Regional Academic-Community Partnership: The Experience of the Mid-South Transdisciplinary Collaborative Center for Health Disparities Research.

Objective: The purpose of this article is to describe the background and experience of the Academic-Community Engagement (ACE) Core of the Mid-South Transdisciplinary Collaborative Center for Health Disparities Research (Mid-South TCC) in impacting the social determinants of health through the establishment and implementation of a regional academic-community partnership. Conceptual Framework: The Mid-South TCC is informed by three strands of research: the social determinants of health, the socioecological model, and community-based participatory research (CBPR). Combined, these elements represent a science of engagement that has allowed us to use CBPR principles at a regional level to address the social determinants of health disparities. Results: The ACE Core established state coalitions in each of our founding states-Alabama, Louisiana, and Mississippi-and an Expansion Coalition in Arkansas, Tennessee, and Kentucky. The ACE Core funded and supported a diversity of 15 community engaged projects at each level of the socioecological model in our six partner states through our community coalitions. Conclusion: Through our cross-discipline, cross-regional infrastructure developed strategically over time, and led by the ACE Core, the Mid-South TCC has established an extensive infrastructure for accomplishing our overarching goal of investigating the social, economic, cultural, and environmental factors driving and sustaining health disparities in obesity and chronic illnesses, and developing and implementing interventions to ameliorate such disparities.

Building Collaborative Health Promotion Partnerships: The Jackson Heart Study.

UNLABELLED: Building Collaborative Health Promotion Partnerships: The Jackson Heart Study. BACKGROUND: Building a collaborative health promotion partnership that effectively employs principles of community-based participatory research (CBPR) involves many dimensions. To ensure that changes would be long-lasting, it is imperative that partnerships be configured to include groups of diverse community representatives who can develop a vision for long-term change. This project sought to enumerate processes used by the Jackson Heart Study (JHS) Community Outreach Center (CORC) to create strong, viable partnerships that produce lasting change. METHODS: JHS CORC joined with community representatives to initiate programs that evolved into comprehensive strategies for addressing health disparities and the high prevalence of cardiovascular disease (CVD). This collaboration was made possible by first promoting an understanding of the need for combined effort, the desire to interact with other community partners, and the vision to establish an effective governance structure. RESULTS: The partnership between JHS CORC and the community has empowered and inspired community members to provide leadership to other health promotion projects. CONCLUSION: Academic institutions must reach out to local community groups and together address local health issues that affect the community. When a community understands the need for change to respond to negative health conditions, formalizing this type of collaboration is a step in the right direction.

Research participants' opinions on genetic research and reasons for participation: a Jackson Heart Study focus group analysis.

The Jackson Heart Study (JHS) convened focus groups to engage the community in dialogue on participation in the National, Heart, Lung and Blood Institute's Candidate Gene Resource (CARe) project. CARe, a genome wide association and candidate gene study, required the release of participant phenotypic and genotypic data with storage at NIH for widespread distribution to qualified researchers. The authors wanted to assess the willingness of an African American community to participate in the genetics research, given the past history of bioethical misconduct in ethnic minority communities. The discussion produced the following specific issues of interest: reasons for participants' interest in genetics research; participants' knowledge about the JHS; and participants' knowledge about genetics research and its advantages and disadvantages. Training on genetic issues was also developed for the JHS community and staff.

Partnering to harmonize IRBs for community-engaged research to reduce health disparities.

Emerging advances in health disparities research include controlled trials and comparative effectiveness studies that are frequently conducted at multiple community and academic sites. Review by different institutional review boards (IRBs) presents a major impediment to the timely and effective conduct of such research. When research involves minority and underserved communities as well as multiple geographic regions, institutional requirements and interpretation of ethical standards may vary substantially. Such variations can complicate the informed consent process and research protocol, and may undermine participant respect and trial quality. In addition, multiple IRB review can lead to unnecessary delays, jeopardizing funding and capacity to perform collaborative projects. In response to these issues, the Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN) is developing a community-partnered approach to streamlining IRB review across its consortium of 18 RCMI grantee institutions that will ensure compliance while enhancing the quality of health disparities research.

Geographic representation of the jackson heart study cohort to the African-American population in Jackson, Mississippi.

Recent advances in geographic information systems software and multilevel methodology provide opportunities for more extensive characterization of "at-risk" populations in epidemiologic studies. The authors used age-restricted, geocoded data from the all-African-American Jackson Heart Study (JHS), 2000-2004, to demonstrate a novel use of the Lorenz curve and Gini coefficient to determine the representativeness of the JHS cohort to the African-American population in a geographic setting. The authors also used a spatial binomial model to assess the geographic variability in participant recruitment across the Jackson, Mississippi, Metropolitan Statistical Area. The overall Gini coefficient, an equality measure that ranges from 0 (perfect equality) to 1 (perfect inequality), was 0.37 (95% confidence interval (CI): 0.30, 0.45), indicating moderate representation. The population of sampled women (Gini coefficient = 0.34, 95% CI: 0.30, 0.39) tended to be more representative of the underlying population than did the population of sampled men (Gini coefficient = 0.49, 95% CI: 0.35, 0.61). Representative recruitment of JHS participants was observed in predominantly African-American and mixed-race census tracts and in the center of the study area, the area nearest the examination clinic. This is of critical importance as the authors continue to explore novel approaches to investigate the geographic variation in disease etiology.