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

doi:10.1017/cts.2022.510

Review

. 2022 Dec 6;7(1):e38.

doi: 10.1017/cts.2022.510. eCollection 2023.

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^{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.

PMID: 36845306
PMCID: PMC9947617
DOI: 10.1017/cts.2022.510

Review

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 et al. J Clin Transl Sci. 2022.

. 2022 Dec 6;7(1):e38.

doi: 10.1017/cts.2022.510. eCollection 2023.

Authors

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.

PMID: 36845306
PMCID: PMC9947617
DOI: 10.1017/cts.2022.510

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.

PubMed Disclaimer

Figures

See this image and copyright information in PMC

Cited by

Laying the groundwork to make diversity, equity, and inclusion front and center in clinical and translational research.
Egede LE, Ruiz R, Mosley-Johnson E, Aguilar-Gaxiola SA, Corbie GM, Wilkins CH, Vitale A, Boulware LE. Egede LE, et al. J Clin Transl Sci. 2023 Apr 24;7(1):e95. doi: 10.1017/cts.2023.524. eCollection 2023. J Clin Transl Sci. 2023. PMID: 37125065 Free PMC article. No abstract available.
Co-designing action-oriented mental health conversations between care providers and ageing Canadians in the community: a participatory mixed-methods study protocol.
Giosa JL, Kalles E, McAiney C, Oelke ND, Aubrecht K, McNeil H, Habib-Perez O, Holyoke P. Giosa JL, et al. BMJ Open. 2024 Jan 31;14(1):e079653. doi: 10.1136/bmjopen-2023-079653. BMJ Open. 2024. PMID: 38296303 Free PMC article.
Rural Health Disparities in Allergy, Asthma, and Immunologic Diseases: The Current State and Future Direction for Clinical Care and Research.
Pongdee T, Brunner WM, Kanuga MJ, Sussman JH, Wi CI, Juhn YJ. Pongdee T, et al. J Allergy Clin Immunol Pract. 2024 Feb;12(2):334-344. doi: 10.1016/j.jaip.2023.11.030. Epub 2023 Nov 25. J Allergy Clin Immunol Pract. 2024. PMID: 38013156 Free PMC article. Review.
Barriers and facilitators to recruitment of underrepresented research participants: Perspectives of clinical research coordinators.
Heffernan ME, Barrera L, Guzman ZR, Golbeck E, Jedraszko AM, Hays PT, Herzog KA, D'Aquila RT, Ison MG, McColley SA. Heffernan ME, et al. J Clin Transl Sci. 2023 Aug 18;7(1):e193. doi: 10.1017/cts.2023.611. eCollection 2023. J Clin Transl Sci. 2023. PMID: 37745931 Free PMC article.
Applying Mixed Methods to Enhance Health Equity in Research on Dementia and Cognitive Impairment.
Gallo JJ, Guetterman TC, Taylor JL, Jenkins E, Murray SM. Gallo JJ, et al. J Aging Health. 2025 Mar;37(3-4_suppl):104S-113S. doi: 10.1177/08982643241308933. Epub 2025 Mar 23. J Aging Health. 2025. PMID: 40123181 Free PMC article.

See all "Cited by" articles

References

1. Vaughan CP, Dale W, Allore HG, et al. AGS report on engagement related to the NIH inclusion across the lifespan policy. Journal of the American Geriatrics Society 2019; 67(2): 211–217. - PMC - PubMed
1. Asare M, Flannery M, Kamen C. Social determinants of health: A framework for studying cancer health disparities and minority participation in research. Oncology Nursing Forum 2017; 44(1): 20–23. - PMC - PubMed
1. Bracken K, Hague W, Keech A, et al. Recruitment of men to a multi-centre diabetes prevention trial: An evaluation of traditional and online promotional strategies. Trials 2019; 20(1): 366. - PMC - PubMed
1. Brijnath B, Croy S, Sabates J, et al. Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimers Dementia (New York) 2022; 8(1): e12222. - PMC - PubMed
1. Evans CJ, Yorganci E, Lewis P, et al. Processes of consent in research for adults with impaired mental capacity nearing the end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine 2020; 18(1): 221. - PMC - PubMed

Publication types

Actions

Grants and funding

K24 AG042765/AG/NIA NIH HHS/United States

LinkOut - more resources

Full Text Sources
- Europe PubMed Central
- PubMed Central

[1] Vaughan CP, Dale W, Allore HG, et al. AGS report on engagement related to the NIH inclusion across the lifespan policy. Journal of the American Geriatrics Society 2019; 67(2): 211–217. - PMC - PubMed

[2] Vaughan CP, Dale W, Allore HG, et al. AGS report on engagement related to the NIH inclusion across the lifespan policy. Journal of the American Geriatrics Society 2019; 67(2): 211–217. - PMC - PubMed

[3] Asare M, Flannery M, Kamen C. Social determinants of health: A framework for studying cancer health disparities and minority participation in research. Oncology Nursing Forum 2017; 44(1): 20–23. - PMC - PubMed

[4] Asare M, Flannery M, Kamen C. Social determinants of health: A framework for studying cancer health disparities and minority participation in research. Oncology Nursing Forum 2017; 44(1): 20–23. - PMC - PubMed

[5] Bracken K, Hague W, Keech A, et al. Recruitment of men to a multi-centre diabetes prevention trial: An evaluation of traditional and online promotional strategies. Trials 2019; 20(1): 366. - PMC - PubMed

[6] Bracken K, Hague W, Keech A, et al. Recruitment of men to a multi-centre diabetes prevention trial: An evaluation of traditional and online promotional strategies. Trials 2019; 20(1): 366. - PMC - PubMed

[7] Brijnath B, Croy S, Sabates J, et al. Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimers Dementia (New York) 2022; 8(1): e12222. - PMC - PubMed

[8] Brijnath B, Croy S, Sabates J, et al. Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimers Dementia (New York) 2022; 8(1): e12222. - PMC - PubMed

[9] Evans CJ, Yorganci E, Lewis P, et al. Processes of consent in research for adults with impaired mental capacity nearing the end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine 2020; 18(1): 221. - PMC - PubMed

[10] Evans CJ, Yorganci E, Lewis P, et al. Processes of consent in research for adults with impaired mental capacity nearing the end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine 2020; 18(1): 221. - PMC - PubMed

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Figures

Similar articles

Cited by

References

Publication types

Grants and funding

LinkOut - more resources

Full Text Sources

Abstract

Figures

Similar articles

Cited by

References

Publication types

Related information

Grants and funding

LinkOut - more resources

Full Text Sources