Health Inequalities, Vulnerable Populations, & Social Justice

Amigas Latinas Motivando el Alma/Latina Friends Motivating the Soul (ALMA)

Giselle Corbie-Smith (Co-PI)

Peer education has been a successful technique to disseminate information and facilitate behavior change. Funded by the GlaxoSmithKline Foundation, this project focuses on promoting emotional health and reducing mental health stressors for Latinas. Via a peer education model, trained Latinas offer coping skills for other Latinas in their community. Phase 1: Develop and pilot a lay health advisor (promotora) stress reduction intervention for recently immigrating Latinas in three counties. Phase 2: Evaluate the effectiveness of ALMA intervention in comparison to a control intervention. Identify policy and community barriers to mental health parity among Latinos using Photovoice with promotoras and companeras. Photovoice is a method that organizations and communities can use to identify and discuss issues that lead to action or other change. Photos and stories from the Photovoice process are shared during a community forum with local policy makers and other stakeholders.

Conceptualizing Trust within Community-Based Participatory Research to Map Public Trust in Research

Giselle Corbie-Smith (PI)

This collaborative project with three other CTSAs uses concept mapping with community and academic research partners as participants to identify and prioritize various dimensions of trust with the intent of: 1) defining a model of how trust is built in CBPR, 2) defining those aspects of public trust in research that arise from CBPR partnerships, and 3) contextually defining a linkage between trust in CBPR partnerships and public trust in research via concept mapping. In order to accomplish these goals, the CARES unit of the NC TraCS will collaborate with faculty of CTSA’s at UCLA, Arkansas, and Pittsburgh on an inter-CTSA research project with the following aims: Aim 1: Describe constructs that community and academic members of CBPR partnerships perceive as, define as, and use to determine the level of trust within CBPR partnerships; Aim 2: Characterize individual determinants of trust within CBPR partnerships that CBPR partners identify as measures of public trust in research; and Aim 3: Conceptualize a relational framework that maps pathways linking trust in CBPR partnerships to public trust in research. At the conclusion of this multisite study our expected outcome is a visual map and initial set of measurable domains that identify the relationship between trust in CBPR partnerships and public trust in research.

Project CONNECT/Community Bridges to Cancer Clinical Trials

Giselle Corbie Smith (PI)

Social Medicine Collaborator: Malika Roman Isler (Co-I)

The goal of Project CONNECT, an initiative funded by EXPORT, is to increase the number of African Americans involved in clinical research. Over 800 community members are enrolled in the Project CONNECT registry and receive information regarding health-related research studies. Project CONNECT also coordinates Community Bridges, an initiative to increase awareness and access to cancer clinical trials among diverse communities in North Carolina by: 1) developing culturally relevant cancer clinical trials education materials, and 2) providing cancer clinical trials training for community partners specializing in cancer prevention and screening education and outreach. Outcomes of Community Bridges include cancer clinical trials education, and culturally relevant social marketing materials. Phase 1: Pilot test three formats of cancer clinical trials education (workshop, role-play, and call and response). Phase 2: Pilot test training of the trainers (TOT) training of Community Bridges to Cancer Clinical Trials workshops within church settings. A comparison workshop called Finding Your Voice provides training in healthcare advocacy, tissue and organ donation, and advance care planning.

Project GRACE (Growing Reaching, Advocating for Change and Empowerment)

Giselle Corbie-Smith (PI)

This project focuses on reducing the spread of HIV in African American communities. The initial focus of Project GRACE has been on decreasing HIV risk among early adolescents and families and reducing community disparities that were contributing to increased incidence of and risk for HIV. The intervention (Teach One Reach One-TORO) is an institutionalized model for training adult and teen lay health advisors as a strategy for reducing sexual activity and unprotected sex. This capacity and equity building model for CPBR has been sustained for over 7 years and has expanded by using performance poetry and photo-voice to further enhance the participant’s experience and knowledge. The Coalition is now pursing funding to address the issue of high prevalence of cardiovascular disease in rural communities.

Project EAST (Education and Access to Services and Testing)

Giselle Corbie-Smith (PI)

As a 5-year NINR funded research study, Project EAST 1) used qualitative methods to define community and individual factors that influence willingness of rural racial and ethnic minorities to participate in HIV/AIDS clinical trials, and 2) employed a systematic theory-based approach to develope a multi-level behavioral intervention to increase willingness to participate in HIV research among people living with HIV/AIDS, and willingness to refer to HIV clinical trials among service providers. This project is a community-academic partnership that spans eight NC counties and leverages the expertise of a multi-county, multi-stakeholder Community Advisory Board.

NC TraCS Community Academic Resources for Engaged Scholarship (CARES)

Giselle Corbie-Smith (Deputy Director), Malika Roman Isler (Faculty Lead – Training and Outreach)

The NC TraCS Institute’s (hyperlink: http://tracs.unc.edu/) mission is to enhance the health of the citizens of North Carolina and to serve as leaders in clinical and translational research by accelerating the pace at which scientific discoveries are translated into improved health care for the public. The CARES service group engages communities, faculty, and health care providers as partners in clinical and translational research and ultimately transforms the way that academic investigators and community members work together while boosting public trust in research. The CARES Services aims to leverage UNC-CH’s extensive experience serving North Carolina communities and multiple existing community-based research efforts to create a unique program with interdisciplinary leadership. Some of the CARES Services for training and outreach include: HBCU Fellows Program, Research Engaged Community Scholars, and Audience-Tailored Trainings.

Mentoring in Community Influences on CVD Risk

Giselle Corbie-Smith (PI)

This project focuses on both research and on mentoring newer researchers to enhance their research capacity in cardiovascular disease prevention and health disparities research. The focus is 1) To extend Dr. Corbie-Smith’s work in engaging communities of color in research by developing interventions to prevent cardiovascular disease that address patients in the context of their communities; 2) To understand the influence of community factors in underserved communities and their impact on healthcare utilization and health outcomes in cardiovascular disease and cardiovascular risk factors; and 3) To provide outstanding mentorship by creating a training environment that supports the conduct of high impact research in cardiovascular prevention and outcomes. The specific aims for the new research include: 1) Determine the feasibility of training a current cohort of community health advisors as navigators to link residents with multiple cardiovascular risk factors to local healthcare systems. 2) Determine the impact of health navigators on cardiovascular risk factor control (HgbA1C, physical activity, BP control, smoking) and access to care for community members at increased risk for cardiovascular disease. 3) Identify community and social factors that influence cardiovascular risk factor control and outcomes. This two-arm trial will investigate the role of navigators on cardiovascular outcomes in community based outreach programs to improve access and utilization of medical services.

Building Bioethics Capacity and Justice in Health

Stuart Rennie (Co-PI)

This program, funded by NIH-Fogarty International Center since 2004, has a mission to promote responsible research in the Democratic Republic and in Francophone Africa. It has established the Center Interdisciplinaire de Bioéthique pour l’Afrique Francophone (CIBAF) at the Kinshasa School of Public Health (KSPH) and has leveraged CIBAF’s resources to enhance ethics capacity locally, regionally and internationally. Through this project, the University of North Carolina (UNC) and KSPH strengthen CIBAF’s ongoing research, educational, consultation and network-building activities by broadening its current repertoire of research ethics, clinical ethics and public health ethics curricula; integrating ethics modules into a new MPH at KSPH with concentration in public health and bioethics; supporting short-term study visits at UNC; creating required research ethics modules for all doctorate degrees at KSPH; strengthening CIBAF members skills in grant and manuscript writing, research design methodology and English. The project has conducted numerous bioethics capacity workshops within the DR Congo, as well as Brazzaville (Republic of Congo) and Bujumbura (Burundi). The program also continues to provide training and support for a new bioethics unit at the Institut Nationale de Santé Publique et Communautaire (INSPC) in Antananarivo, Madagascar.

LinCS 2 Durham: A Partnership Initiative to for HIV Prevention Trials

Malika Roman Isler (CI)

This 5-7 year NINR-funded research study explores the future success of vaccine, microbicide, pre-exposure prophylaxis and other emerging HIV prevention technologies in the African-American community by evaluating a systematic partnership-building approach for HIV prevention trial planning and implementation. This project describes the community and group affiliations among young (ages 18-30) at-risk African Americans, and measures the relationship among experiences of discrimination, levels of trust, and support for new HIV prevention technologies in this population. Additionally, we have developed a community-focused research literacy curriculum to increase familiarity with HIV prevention advances, clinical research, and community-research partnerships.

Project EXPORT: Carolina-Shaw Comprehensive NCMHD Research Center

Malika Roman Isler (CI)

The goal of the Carolina-Shaw Comprehensive NCMHD Research Center is to conduct cutting edge health disparities research that leverages the Carolina Church Network. The focus of this Center is to eliminate chronic disease health disparities between whites and blacks by serving as a research incubator that conducts innovative minority health research among adult African-American populations in North Carolina.

NC Cleft Outcomes Study

Ronald Strauss

End of grade standardized educational tests from the NC Department of Public Instruction are being linked with birth records in a population study in North Carolina, USA. 1281 children with cleft in the North Carolina Birth Defects Registry were born between 1997-2004. These children are now in grades 3-10 and cumulative longitudinal overall, verbal and math testing records are examined. Their school performance and parental perceptions (on-line and mail survey) are to be compared to samples drawn from 12,000 unaffected children in North Carolina from the same birth years. School attendance patterns and use of special services are profiled. Using nuanced diagnostic/genetic assessment allows for characterization of sub-groups within the population of children with cleft and permits for very fine-grained analyses.

State-wide standardized end-of-grade educational testing on a population basis provides an excellent opportunity to identify how children with clefts demonstrate similarities and differences from unaffected peers. Parental surveys offer insights into how families envision and accommodate to school experiences and performance. This study highlights the prevalence of academic and personal challenges between ages 8-15 years old in both children with cleft and unaffected peers.

Justice Considerations in the Use of Psychosocial Criteria for Organ Allocation

Rebecca Walker

Potential organ recipients are screened for medical appropriateness for transplant, but also “psychosocial” (PS) factors that may impact post-transplant outcomes. These factors may include behavioral and psychological issues (“substance” use, psychiatric disorder or intellectual capacity), relationships and support networks, financial resources, and environmental circumstances (ability to travel, proximity to health care resources). When such screening is used to assess eligibility for transplant (rather than to provide potential recipients with additional services and support to meet their deficits or needs) several justice-based questions are raised: 1. What are the implications of the use of PS factors for disparities in health care access across race and social class? 2. How do PS factors relate to the problematic use of “social values” in the allocation of scarce health care resources? 3. What justifies using PS factors to determine eligibility for transplant rather than as a factor in the distribution of organs? 2. From the point of view of procedural justice, how are transparency and uniformity taken into account? This philosophical project will address these justice questions in a series of articles for biomedical and bioethics audiences.