Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population

Engaging communities is highly recommended in the conduct of health research among vulnerable populations. The strength of community-engaged research is well documented and is recognised as a useful approach for eliminating health disparities and improving health equity. In this article, five interdisciplinary teams from the Medical University of South Carolina present their involvement with community-engaged research with a unique population of Gullah African Americans residing in rural South Carolina. Their work has been integrated with the nine established principles of community-engaged research: establishing clear goals, becoming knowledgeable about the community, establishing relationships, developing community self-determination, partnering with the community, maintaining respect, mobilising community assets, releasing control, and maintaining community collaboration. In partnership with a Citizen Advisory Committee, developed at the inception of the first community-engaged research project, the academic researchers have been able to build on relationships and trust with this population to sustain partnerships and to meet major research objectives over a 20-year period. Challenges observed include structural inequality, organisational and cultural issues, and lack of resources for building sustainable research infrastructure. Lessons learned during this process include the necessity for clearly articulated and shared goals, knowledge about the community culture, and embedding the cultural context within research approaches. Keywords: Engaged health research, vulnerable populations, longterm collaboration, South Carolina 'Gullah' communitie

Responding to the Call: Building a Training Program to Diversify the Academy in Alzheimer’s Disease Research

Alzheimer\u27s disease and related dementias (ADRD) are at the forefront of the United States (US) public health agenda due to their tremendous human and financial burden. Further, disproportionately high ADRD rates among racial/ethnic minorities require incorporating the unique perspectives of racially and ethnically diverse scientists, which will necessitate diversifying the scientific workforce that investigates disparities in aging. The purpose of this paper is to describe the training and mentorship initiatives of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer\u27s Disease and Minority Research, emphasizing lessons learned from our engagement with underrepresented minority and minoritized (URM) Scientists. We highlight three aims of the Center\u27s training and mentorship component: (1) Fund pilot projects for URM Scientists conducting research on sociocultural, behavioral, and environmental factors that influence ADRD-related health disparities; (2) Provide mentorship to build the research capacity of Center Scientists; and (3) Offer research education in Health Disparities and Minority Aging Research to Center Scientists and interested researchers at all partner institutions. Our experience may be a practical resource for others developing interdisciplinary training programs to increase the pipeline of URM Scientists conducting ADRD research

Using increased trust in medical researchers to increase minority recruitment: The RECRUIT cluster randomized clinical trial

While extensive literature exists on barriers and strategies to increase minority participation in clinical trials, progress is limited. Few strategies were evaluated in randomized trials. We studied the impact of RECRUIT, a trust-based, cluster randomized minority recruitment trial layered on top of four traditional NIH-funded parent trials (BMT CTN, CABANA, PACES, STEADY-PD III; fifty specialty sites). RECRUIT was conducted from July 2013 through April 2017. Intervention sites implemented trust-based approaches customized to individual sites, promoting relationships between physician-investigators and minority-serving physicians and their minority patients. Control sites implemented only parent trials\u27 recruitment procedures. Adjusting for within-site clustering, we detected no overall intervention effect, odds ratio 1.3 (95% confidence limits 0.7,2.4). Heterogeneity among parent trials may have obscured the effect. Of the four parent trials, three enrolled more minorities in intervention versus control sites. CABANA odds ratio = 4.2 (adjusted 95%CL 1.5,11.3). PACES intervention sites enrolled 63% (10/16) minorities; control sites enrolled one participant in total, a minority, yielding an incalculable odds ratio. STEADY-PD III odds ratio = 2.2 (adjusted 95%CL 0.6,8.5). BMT CTN odds ratio \u3c 1, 0.8 (adjusted 95%CL 0.4,1.8). In conclusion, RECRUIT findings suggest the unique trust-based intervention increased minority recruitment to intervention trials in (3/4) of studied trials. Physician-investigators\u27 participation was critical to recruitment success. Lack of commitment to minority recruitment remained a barrier for some physician-investigators, especially in control sites. We recommend prospective physician investigators commit to minority recruitment activities prior to selection as site investigators and trial funding include some compensation for minority recruitment efforts.TRIAL REGISTRATION ClinicalTrials.govNCT01911208

Improving Adherence to Adjuvant Hormonal Therapy Among Disadvantaged Women Diagnosed With Breast Cancer in South Carolina: Proposal for a Multimethod Study

Background: Current clinical guidelines recommend that hormone receptor-positive breast cancer survivors take adjuvant hormonal therapy (AHT) for 5 to 10 years, following the end of definitive treatment. However, fewer than half of patients adhere to the guidelines, and suboptimal adherence to AHT is associated with an increased risk of breast cancer mortality. Research has extensively documented sociodemographic and disease-specific factors associated with adherence to AHT, but very little evidence exists on behavioral factors (eg, knowledge, patient-provider communication) that can be modified and targeted by interventions. Objective: The goal of this study is to develop and test a theory-based, multilevel intervention to improve adherence to AHT among breast cancer survivors from racially and socioeconomically disadvantaged backgrounds (eg, Medicaid-insured). The specific aims are to (1) explore multilevel (eg, patient, health care system) factors that influence adherence to AHT; (2) develop a theory-based, multilevel intervention to improve adherence to AHT; and (3) pilot test and evaluate the intervention developed in Aim 2. Methods: For Aim 1, we will recruit breast cancer survivors and health care professionals to participate in semistructured interviews to gain their perspectives about barriers and facilitators to AHT use. We will conduct a directed content analysis of the Aim 1 qualitative interview data. For Aim 2, we will integrate Aim 1 findings and current literature into the design of a multilevel intervention using an Intervention Mapping approach. For Aim 3, we will recruit Medicaid-insured breast cancer survivors to assess the feasibility of the pilot intervention. Results: From May 2016 to July 2018, we completed interviews with 19 breast cancer survivors and 23 health care professionals in South Carolina. We will conduct a directed content analysis of the qualitative interview data. Results from this analysis will be used, in combination with current literature, to design (Aim 2) and pilot test a theory-based multilevel intervention (Aim 3) in Summer 2021. Results of the pilot are expected for Fall 2021. Conclusions: This study will provide a deeper understanding of how to improve adherence to AHT, using a novel and multilevel approach, among socioeconomically disadvantaged breast cancer survivors who often experience disproportionate breast cancer mortality

US Cancer Centers of Excellence Strategies for Increased Inclusion of Racial and Ethnic Minorities in Clinical Trials

PURPOSE:: Participation of racial and ethnic minority groups (REMGs) in cancer trials is disproportionately low despite a high prevalence of certain cancers in REMG populations. We aimed to identify notable practices used by leading US cancer centers that facilitate REMG participation in cancer trials. METHODS:: The National Minority Quality Forum and Sustainable Healthy Communities Diverse Cancer Communities Working Group developed criteria by which to identify eligible US cancer centers-REMGs comprise 10% or more of the catchment area; a 10% to 50% yearly accrual rate of REMGs in cancer trials; and the presence of formal community outreach and diversity enrollment programs. Cancer center leaders were interviewed to ascertain notable practices that facilitate REMG accrual in clinical trials. RESULTS:: Eight cancer centers that met the Communities Working Group criteria were invited to participate in in-depth interviews. Notable strategies for increased REMG accrual to cancer trials were reported across five broad themes: commitment and center leadership, investigator training and mentoring, community engagement, patient engagement, and operational practices. Specific notable practices included increased engagement of health care professionals, the presence of formal processes for obtaining REMG patient/caregiver input on research projects, and engagement of community groups to drive REMG participation. Centers also reported an increase in the allocation of resources to improving health disparities and increased dedication of research staff to REMG engagement. CONCLUSION:: We have identified notable practices that facilitate increased participation of REMGs in cancer trials. Wide implementation of such strategies across cancer centers is essential to ensure that all populations benefit from advances in an era of increasingly personalized treatment of cancer

Linking mental and primary health care in rural areas

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/44091/1/10488_2005_Article_BF02254827.pd

The effects of perceived control on health care utilization among African-Americans.

African-Americans of all ages are in poorer health relative to their counterparts in the general population. Given this public health problem, the study of factors influencing health care utilization among African-Americans is of vital importance. The Andersen-Newman (1973) model of health care utilization takes into account many of these factors. However, the possible effects of perceived control on the relationships among these factors are not clear. This research addressed the basic question of whether the Andersen-Newman (1973) model would function differentially for African-Americans of high vs. low perceived control. Specifically, a causal model of the relationships in the Andersen-Newman (1973) model was evaluated using the National Survey of Black Americans (Jackson & Gurin, 1987). Predisposing factors were measured by employment, education, age, and gender; enabling factors by family income and health insurance coverage; need factors by number of chronic conditions, extent of disability, and satisfaction with health; health care utilization by contact with different types of health care providers; and perceived control by generalized feelings of control over life. The causal model was evaluated by analysis of covariance structures using LISREL procedures. One major finding of this study is that modification indices suggested the addition to the original model of five new paths, from age and gender directly to health care utilization, from number of chronic conditions directly to extent of disability and satisfaction with health, and from extent of disability to satisfaction with health. A series of matrix invariance tests revealed significant differences between the two perceived-control groups only in the Psi matrix of error variance, where significantly higher values for health insurance coverage were found for the low perceived-control group. The results of this study indicate that at least one significant factor influencing health care utilization among African-Americans was not taken into account by the model. These results yield valuable information on means of improving health care utilization among African-Americans.Ph.D.Black studiesHealth and Environmental SciencesPsychologyPublic healthSocial SciencesSocial psychologySocial workUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/128985/2/9308313.pd

Measurement in Veterans Affairs Health Services Research: Veterans as a Special Population

OBJECTIVE: To introduce this supplemental issue on measurement within health services research by using the population of U.S. veterans as an illustrative example of population and system influences on measurement quality. PRINCIPAL FINDINGS: Measurement quality may be affected by differences in demographic characteristics, illness burden, psychological health, cultural identity, or health care setting. The U.S. veteran population and the VA health system represent a microcosm in which a broad range of measurement issues can be assessed. CONCLUSIONS: Measurement is the foundation on which health decisions are made. Poor measurement quality can affect both the quality of health care decisions and decisions about health care policy. The accompanying articles in this issue highlight a subset of measurement issues that have applicability to the broad community of health services research. It is our hope that they stimulate a broad discussion of the measurement challenges posed by conducting “state-of-the-art” health services research