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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.
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.
  • LeCroy MN; Department of Pediatrics, Division of Academic General Pediatrics, Albert Einstein College of Medicine, Bronx, NY, USA.
  • Potter LN; Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA.
  • Bandeen-Roche K; 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.
  • Bianco ME; Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins Institute for Clinical and Translational Research, Baltimore, MD, USA.
  • Cappola AR; Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
  • Carter EB; Division of Endocrinology, Diabetes, and Metabolism, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
  • Dayan PS; Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, Washington University, School of Medicine, St. Louis, MO, USA.
  • Eckstrom E; Department of Emergency Medicine, Columbia University, Vagelos College of Physicians and Surgeons, New York, NY, USA.
  • Edwards DF; Department of Medicine, Division of General Internal Medicine & Geriatrics, Oregon Clinical & Translational Research Institute, Oregon Health & Science University, Portland, OR, USA.
  • Farabi SS; 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.
  • Fisher SD; Center for Human Nutrition, Washington University School of Medicine, St. Louis, MO, USA.
  • Giordano J; Goldfarb School of Nursing at Barnes-Jewish College, St. Louis, MO, USA.
  • Hanson HA; Department of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine/Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
  • Jenkins E; University of Rochester Medical Center, Rochester, NY, USA.
  • Juhn Y; Department of Surgery and Population Health Sciences, University of Utah, Salt Lake City, UT, USA.
  • Kaskel F; Johns Hopkins University School of Nursing, Baltimore, MD, USA.
  • Stake CE; Precision Population Science Lab and Artificial Intelligence Program, Department of Pediatric and Adolescent Medicine, Mayo Clinic, Rochester, MN, USA.
  • Reeds DN; Department of Pediatrics, Division of Pediatric Nephrology, Children's Hospital at Montefiore, Bronx, NY, USA.
  • Schleiss MR; Division of Pediatric Surgery, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
  • Wafford QE; Center for Human Nutrition, Washington University School of Medicine, St. Louis, MO, USA.
  • McColley SA; Goldfarb School of Nursing at Barnes-Jewish College, St. Louis, MO, USA.
J Clin Transl Sci ; 7(1): e38, 2023.
Article in English | MEDLINE | ID: covidwho-2232319
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.
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Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Prognostic study / Randomized controlled trials / Reviews Language: English Journal: J Clin Transl Sci Year: 2023 Document Type: Article Affiliation country: Cts.2022.510

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Full text: Available Collection: International databases Database: MEDLINE Type of study: Experimental Studies / Prognostic study / Randomized controlled trials / Reviews Language: English Journal: J Clin Transl Sci Year: 2023 Document Type: Article Affiliation country: Cts.2022.510