Understanding Hispanic/Latino Participation in Clinical Trials and Observational Studies, and Strategies to Increase Participation: A Targeted Literature Review.

Hispanic/Latino representation in medical research remains poor. We describe factors affecting rates of recruitment, participation, adherence, and retention of Hispanics/Latinos in clinical studies in the United States and characterize proposed strategies to improve these rates. A targeted literature review was conducted. Relevant studies were identified from Embase, MEDLINE®, and CENTRAL from January 1, 2010 to September 4, 2020. Sixty-eight studies were included. Key facilitators to research involvement were establishing trust between research staff and participants, incorporating familism, and using culturally appropriate language. Common elements of successful strategies for improving research involvement included incorporating community partners, bilingual and culturally competent research staff, continuous engagement and building relationships between participants and staff, and incorporating Hispanic/Latino cultural values. There is no universal strategy to improve research involvement of Hispanics/Latinos. The best strategy is likely a combination of key elements from several strategies, tailored to each unique study population. Further research is needed.

Recommendations from a Dialogue on Evolving National Cancer Institute-Designated Comprehensive Cancer Center Community Outreach and Engagement Requirements: A Path Forward.

While cancer mortality is declining in the United States, significant racial, ethnic, economic and geographic inequities persist. To help address inequities in cancer treatment, care, support and research, the National Cancer Institute (NCI) instituted the community outreach and engagement (COE) mandate for NCI-designated comprehensive cancer centers (CCCs). The Bristol Myers Squibb Foundation designed a convening and listening session on COE with NCI leaders and staff gathering representatives from CCCs and the broader cancer community. This paper captures recommendations from the listening session for the NCI and CCCs to further evolve the implementation and impact of the COE mandate on cancer control and outcomes.

Special Convening and Listening Session on Health Equity and Community Outreach and Engagement at National Cancer Institute-Designated Comprehensive Cancer Centers.

In recent years, the cancer research and care community has been more attuned to health equity, increasingly pursuing coordinated and comprehensive action to achieve equitable health outcomes. In addition to its support of a joint research agenda for health disparities in 2017, the National Cancer Institute (NCI) has demonstrated its commitment to addressing health inequities with its 2012 requirement for cancer centers to define and address the needs of a local "catchment area" and the 2016 mandate for Community Outreach and Engagement (COE). With several years of experience with the COE requirements, there is an opportunity to reflect on the experience to-date and identify opportunities to bolster the impact of COE on equitable cancer outcomes for the future. To do so, the Bristol Myers Squibb Foundation (BMSF) hosted a special convening and listening session in April 2019. The session agenda was cocreated by BMSF and NCI leaders and staff. It brought together 41 individuals, including representatives from the NCI Cancer Centers Program, Division of Cancer Control and Population Health and Center to Reduce Cancer Health Disparities, 22 NCI-designated, emerging or affiliated comprehensive cancer centers, and the broader cancer community. This article captures key themes from that meeting, including an overview of current COE efforts, with a deeper look at how four cancer centers are embedding health equity and COE efforts into their institutions and work, and the successes and challenges they have encountered.

Development of an Actionable Framework to Address Cancer Care Disparities in Medically Underserved Populations in the United States: Expert Roundtable Recommendations.

PURPOSE: Cancer disparities persist among medically underserved populations despite widespread efforts to address them. We describe the development of a framework for addressing cancer care disparities across the cancer care continuum (CCC), guided by the CCC domains established by the Institute of Medicine/National Academies of Sciences, Engineering, and Medicine (IOM/NAS). MATERIALS AND METHODS: An environmental scan was conducted to identify strategies and associated experts who are providing or have successfully provided community- and/or patient-centric IOM/NAS-defined domain standards to our target populations. A multistakeholder expert roundtable working group was convened for framework development. A premeeting survey informed agenda development, documented expert practices for target populations, and identified priority areas for meeting focus. RESULTS: The environmental scan identified 84 unique experts across 8 stakeholder groups and 44 patient organizations; 50 were invited to the roundtable and 33 participated. They broadly represented disease sites, geography, and experience with target populations and all CCC domains. The premeeting survey (16 responses) identified coordination of care or patient navigation (66.7%), community engagement (60.0%), and healthcare system changes (53.3%) as priority focus areas. The experts identified access and treatment barriers or gaps within and between CCC domains, specified key notable practices to address these, and developed an actionable framework and recommendations for each priority focus area. CONCLUSION: The framework and recommendations are intended to guide researchers, healthcare leaders, advocates, community- and patient-focused service organizations, and policy leaders to address and promote health equity in cancer care access and treatment outcomes.

New Directions For Foundations In Health Equity.

Rising income inequality and pessimism about the current and future status of race relations in the United States make this both a challenging time for the pursuit of health equity and also an important opportunity for action. We glean lessons from past and ongoing philanthropic investments in health equity and recommend approaches that can guide future work by foundations. Improving health equity is a complex process that must take into account a variety of factors that affect health, of which access to high-quality health care is just one element. Accordingly, improving health equity will require the combined forces of philanthropy, the public sector, and sectors that have not traditionally been identified with health.

HIV/AIDS in African children: the Bristol-Myers Squibb Foundation and Baylor response.

In 2000, 1.4 million children were living with HIV/AIDS in sub-Saharan Africa, according to the Joint United Nations Programme on HIV/AIDS. Few of them were receiving lifesaving antiretroviral therapy because public health systems lacked the clinical infrastructure and trained health care workers to implement and disseminate high-quality care. Research has shown that without treatment, half of HIV-infected infants die by age two. From 2000 to 2011 the Bristol-Myers Squibb Foundation worked with the Baylor International Pediatric AIDS Initiative, governments in sub-Saharan Africa, and other funders to help ensure that children received needed treatment and care. The partnership led to the creation of seven Children's Clinical Centers for Excellence and the Pediatric AIDS Corps of physicians. The mortality rate for the 13,154 children receiving antiretroviral therapy at the centers was 3.35 deaths per 100 patient-years, which compares favorably with results of similar programs in Africa. The experience showed that strategic investments by foundations and others can have a positive impact on health service delivery and the training of health professionals to meet the specific needs of HIV-infected children for the short and long terms.

The effect of community-based support services on clinical efficacy and health-related quality of life in HIV/AIDS patients in resource-limited settings in sub-Saharan Africa.

Antiretroviral therapy (ART) for HIV/AIDS in developing countries has been rapidly scaled up through directed public and private resources. Data on the efficacy of ART in developing countries are limited, as are operational research studies to determine the effect of selected nonmedical supportive care services on health outcomes in patients receiving ART. We report here on an investigation of the delivery of medical care combined with community-based supportive services for patients with HIV/AIDS in four resource-limited settings in sub-Saharan Africa, carried out between 2005 and 2007. The clinical and health-related quality of life (HRQOL) efficacy of ART combined with community support services was studied in a cohort of 377 HIV-infected patients followed for 18 months, in community-based clinics through patient interviews, clinical evaluations, and questionnaires. Patients exposed to community-based supportive services experienced a more rapid and greater overall increase in CD4 cell counts than unexposed patients. They also had higher levels of adherence, attributed primarily to exposure to home-based care services. In addition, patients receiving home-based care and/or food support services showed greater improvements in selected health-related QOL indicators. This report discusses the feasibility of effective ART in a large number of patients in resource-limited settings and the added value of concomitant community-based supportive care services.