In Journal of clinical and translational science
Exclusion of special populations (older adults; pregnant women, children, and adolescents; individuals of lower socioeconomic status and/or who live in rural communities; people from racial and ethnic minority groups; individuals from sexual or gender minority groups; and individuals with disabilities) in research is a pervasive problem, despite efforts and policy changes by the National Institutes of Health and other organizations. These populations are adversely impacted by social determinants of health (SDOH) that reduce access and ability to participate in biomedical research. In March 2020, the Northwestern University Clinical and Translational Sciences Institute hosted the "Lifespan and Life Course Research: integrating strategies" "Un-Meeting" to discuss barriers and solutions to underrepresentation of special populations in biomedical research. The COVID-19 pandemic highlighted how exclusion of representative populations in research can increase health inequities. We applied findings of this meeting to perform a literature review of barriers and solutions to recruitment and retention of representative populations in research and to discuss how findings are important to research conducted during the ongoing COVID-19 pandemic. We highlight the role of SDOH, review barriers and solutions to underrepresentation, and discuss the importance of a structural competency framework to improve research participation and retention among special populations.
LeCroy Madison N, Potter Lindsey N, Bandeen-Roche Karen, Bianco Monica E, Cappola Anne R, Carter Ebony B, Dayan Peter S, Eckstrom Elizabeth, Edwards Dorothy F, Farabi Sarah S, Fisher Sheehan D, Giordano Judy, Hanson Heidi A, Jenkins Emerald, Juhn Young, Kaskel Frederick, Stake Christine E, Reeds Dominic N, Schleiss Mark R, Wafford Q Eileen, McColley Susanna A
2023
Life course research, research participation, social determinants of health, special populations, structural competency
