Barriers to and solutions for representative inclusion across the lifespan and in life course research: The need for structural competency highlighted by the COVID-19 pandemic

Madison N. Lecroy, Lindsey N. Potter, Karen Bandeen-Roche, Monica E. Bianco, Anne R. Cappola, Ebony B. Carter, Peter S. Dayan, Elizabeth Eckstrom, Dorothy F. Edwards, Sarah S. Farabi, Sheehan D. Fisher, Judy Giordano, Heidi A. Hanson, Emerald Jenkins, Young Juhn, Frederick Kaskel, Christine E. Stake, Dominic N. Reeds, Mark R. Schleiss, Q. Eileen WaffordSusanna A. McColley

Research output: Contribution to journalReview articlepeer-review

10 Scopus citations

Abstract

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.

Original languageEnglish
Article numbere38
JournalJournal of Clinical and Translational Science
Volume7
Issue number1
DOIs
StatePublished - Dec 6 2023

Keywords

  • Life course research
  • research participation
  • social determinants of health
  • special populations
  • structural competency

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