ASPO Abstracts
Ensuring diversity in cancer research participation by using culturally appropriate modalities
Category: Cancer Health Disparities, Lifestyles Behavior, Energy Balance & Chemoprevention
Conference Year: 2018
Abstract Body:
It has been long understood that minorities are underrepresented in research. Our efforts focus on the diverse populations of Washington Heights/Inwood (WHI), in North Manhattan. This area is home a population that is 27% below the federal poverty line, 71% Hispanic, 48% foreign born, and 39% have limited English proficiency while 22% report no health insurance, and 16% report inadequate medical care. Cancer ranks 2nd in causes of death. (NYC.gov Community Health Profiles 2015). The Community & Ambulatory Research & Enrollment (CARE) Shared Resource of the Herbert Irving Comprehensive Cancer Center, (HICCC), was created to ensure that research cohorts at our cancer center are representative of our community. We provide a centralized, multidisciplinary, culturally sensitive and efficient resource for recruiting human subjects to participate in research. We enhance the quality and effectiveness of cancer prevention research and ensure diversity in study participation by culturally matched recruitment, low literacy translations, literacy testing of research tools, and community education. Subject demographics on enrollment and refusals are evaluated and utilized to eliminate barriers to study enrollment. Culturally appropriate community education workshops prepare potential research subjects for clinical trial participation. Information disseminated is translated and tailored for low literacy populations. Our efforts have resulted in a direct impact to research at our cancer center. We have achieved great success in the promotion of community participation in research. With 45 study partners, studies have been streamlined, and documents made more understandable to community. Additionally, 77% of subjects enrolled by CARE are minorities. In our community Cancer Genetics Education Program, 75% reported intention to participate research, and nearly all participants stated the information provided could assist them in making better healthcare decisions. Our results demonstrate a significant increase in research understanding and participation as a result of linguistically and culturally appropriate research materials and study designs, and recruiters and educators that are culturally matched to the population.
Keywords: disparities, recruitment, cancer research