Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Engaging African Americans in Research: The Recruiter's Perspective.

Purpose: To examine barriers recruiters encounter when enrolling African American study participants, identify motivating factors to increase research participation, and provide recommendations to facilitate successful minority recruitment. Background: Recruiters are often the first point of contact between the research study and potential African American participants. While challenges in enrolling African Americans into clinical and epidemiologic research has been reported in numerous studies the non-physician recruiter's role as a determinant of overall participation rates has received minimal attention. Methods: We conducted four 90-minute teleconference focus groups with 18 recruiters experienced in enrolling African Americans for clinical and epidemiologic studies at five academic/medical institutions. Participants represented diverse racial and ethnic backgrounds and were asked to reflect on barriers preventing African Americans from participating in research studies, factors that motivated participation, and recommendations to increase participation of African Americans in research. Multi-coder and thematic data analysis was implemented using the Braun and Clarke method. Results: Prominent concerns in recruitment of African Americans in research include fear and mistrust and inflexible research protocols. The participants suggest that improved recruitment could be achieved through cross-cultural and skillset building training opportunities for recruiters, greater community engagement among researchers, and better engagement with clinic staff and research teams.

Modifiable patient-reported factors associated with cancer-screening knowledge and participation in a community-based health assessment.

BACKGROUND: We sought to identify modifiable factors associated with cancer screening in a community-based health assessment. METHODS: 24 organizations at 47 community events in central North Carolina distributed a 91-item survey from April-December 2017. Responses about (1) interest in disease prevention, (2) lifestyle choices (e.g., diet, tobacco), and (3) perceptions of primary care access/quality were abstracted to examine their association with self-reported screening participation and knowledge about breast, prostate, and colorectal cancer. RESULTS: 2135/2315 participants (92%; 38.5% White, 38% Black, 9.9% Asian) completed screening questions. >70% of screen-eligible respondents reported guideline-concordant screening. Healthy dietary habits were associated with greater knowledge about breast and colorectal cancer screening; reporting negative attitudes about and barriers to healthcare were associated with less breast, prostate, and colorectal cancer screening. Having a place to seek medical care (a proxy for primary care access) was independently associated with being ∼5 times as likely to undergo colorectal screening (OR 4.66, 95% CI 1.58-13.79, all p < 0.05). CONCLUSIONS: In this diverse, community-based sample, modifiable factors were associated with screening engagement, highlighting opportunities for behavioral intervention.

Project PLACE: Enhancing community and academic partnerships to describe and address health disparities.

Achieving cancer health equity is a national imperative. Cancer is the second leading cause of death in the United States and in North Carolina (NC), where the disease disproportionately impacts traditionally underrepresented race and ethnic groups, those who live in rural communities, the impoverished, and medically disenfranchised and/or health-disparate populations at high-risk for cancer. These populations have worse cancer outcomes and are less likely to be participants in clinical research and trials. It is critical for cancer centers and other academic health centers to understand the factors that contribute to poor cancer outcomes, the extent to which they impact the cancer burden, and develop effective interventions to address them. Key to this process is engaging diverse stakeholders in the development and execution of community and population health assessments, and the subsequent programs and interventions designed to address the need across the catchment area. This chapter describes the processes and lessons learned of the Duke Cancer Institute's (DCI) long standing community partnerships that led to Project PLACE (Population Level Approaches to Cancer Elimination), a National Cancer Institute (NCI)-funded community health assessment reaching 2315 respondents in 7 months, resulting in a community partnered research agenda to advance cancer equity within the DCI catchment area. We illustrate the application of a community partnered health assessment and offer examples of strategic opportunities, successes, lessons learned, and implications for practice.