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 Wafford; Susanna A McColley

doi:10.1017/cts.2022.510

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

J Clin Transl Sci. 2022 Dec 6;7(1):e38. doi: 10.1017/cts.2022.510. eCollection 2023.

Authors

Madison N LeCroy^{1

2}, Lindsey N Potter³, Karen Bandeen-Roche⁴, Monica E Bianco⁵, Anne R Cappola⁶, Ebony B Carter⁷, Peter S Dayan⁸, Elizabeth Eckstrom⁹, Dorothy F Edwards¹⁰, Sarah S Farabi^{11

12}, Sheehan D Fisher¹³, Judy Giordano¹⁴, Heidi A Hanson¹⁵, Emerald Jenkins¹⁶, Young Juhn¹⁷, Frederick Kaskel¹⁸, Christine E Stake¹⁹, Dominic N Reeds^{11

12}, Mark R Schleiss²⁰, Q Eileen Wafford²¹, Susanna A McColley⁵

Affiliations

¹ Department of Pediatrics, Division of Academic General Pediatrics, Albert Einstein College of Medicine, Bronx, NY, USA.
² Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA.
³ Center for Health Outcomes and Population Equity (HOPE), Department of Population Health Sciences, Huntsman Cancer Institute and the University of Utah, Salt Lake City, UT, USA.
⁴ Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins Institute for Clinical and Translational Research, Baltimore, MD, USA.
⁵ Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
⁶ Division of Endocrinology, Diabetes, and Metabolism, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
⁷ Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, Washington University, School of Medicine, St. Louis, MO, USA.
⁸ Department of Emergency Medicine, Columbia University, Vagelos College of Physicians and Surgeons, New York, NY, USA.
⁹ Department of Medicine, Division of General Internal Medicine & Geriatrics, Oregon Clinical & Translational Research Institute, Oregon Health & Science University, Portland, OR, USA.
¹⁰ Collaborative Center for Health Equity, Institute for Clinical and Translational Research and Department of Medicine, School of Medicine and Public Health, University of Wisconsin Madison, Health Sciences Learning Center, Madison, WI, USA.
¹¹ Center for Human Nutrition, Washington University School of Medicine, St. Louis, MO, USA.
¹² Goldfarb School of Nursing at Barnes-Jewish College, St. Louis, MO, USA.
¹³ Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine/Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
¹⁴ University of Rochester Medical Center, Rochester, NY, USA.
¹⁵ Department of Surgery and Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
¹⁶ Johns Hopkins University School of Nursing, Baltimore, MD, USA.
¹⁷ Precision Population Science Lab and Artificial Intelligence Program, Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN, USA.
¹⁸ Department of Pediatrics, Division of Pediatric Nephrology, Children's Hospital at Montefiore, Bronx, NY, USA.
¹⁹ Division of Pediatric Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
²⁰ Department of Pediatrics, Division of Infectious Diseases, University of Minnesota Medical School, Minneapolis, MN, USA.
²¹ Galter Health Sciences Library and Learning Center, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

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.

Keywords: Life course research; research participation; social determinants of health; special populations; structural competency.

Publication types

Review

Grants and funding

K24 AG042765/AG/NIA NIH HHS/United States