Advancing Health Disparities Research and Improving Health for All
Dear Editor
Accolades to Routen and colleagues [1] for addressing the need to move health inequities research beyond single, heterogeneous, demographic categories by including a combination of variables to better understand the complex array of factors contributing to group differences. Intersectional approaches are readily compatible with population level studies and increasingly warranted in clinical studies [2]. We identify three additional areas that we believe will help to advance health disparities research. First, consistent terminology will improve the interpretation and comparability across studies. Second, organizing research efforts within recognized frameworks will enhance the integration of the findings across studies and inform clinical relevance. Third, study sample identification and statistical approaches play a significant role in the interpretability of findings.
Health inequities are evident across the world. Governing and funding bodies have guidelines to assist with the identification of common terminology that can be applied in clinical and research settings. For example, the National Institutes of Health (NIH) requires investigators to follow Federal Regulations (NOT-OD-01-053) on collecting, reporting, and presenting ethnic and race data, identified as sociopolitical constructs for all clinical research participants [3,4]. Somewhat similar, in the United Kingdom, guided by the Census of England and Wales, data are collected on group classifications of ethnic and heritage backgrounds [5 ,6]. Intersectional approaches will be further enhanced with the use of consistent terminology across studies.
Second, numerous frameworks are available to provide a conceptual infrastructure for integrating collective findings and informing evidence-based interpretations. The World Health Organization has a Social Determinants of Health Equity Operational Framework in development [7]. Additionally, several institutes at the NIH have developed frameworks and models relevant to health disparities research. The National Institute on Aging Health Disparities Research Framework was designed with the primary goal of evaluating areas of health disparities research that have been addressed and in what areas deficits remain [8 ,9]. The National Institute of Minority Health and Health Disparities Research Framework extends from the NIA Framework and incorporates components of the Bronfenbrenner Socioecological Model, depicting the complex interactions from the individual (micro) level to the societal (macro) level [10]. Further, the National Center for Complementary and Integrative Health Whole-Person Health Model identifies levels of analysis and domains of influence [11]. Similarly, the National Institute of Mental Health’s Research Domain Criteria Framework includes environmental factors and levels of analysis [12]. Collectively, the frameworks provide overlapping organization and terms applicable across disciplines.
Third, approaches to improve sample characterization and statistical techniques to strengthen the interpretation of evidence obtained are needed [13]. Inferring group differences requires a sample representative of the identified population. When the sample is not generalizable to the intended population, then additional characteristics of the sample are necessary to interpret findings specific to the group represented, consistent with an intersectional approach. Participants in clinical studies are often not representative and generalizable to the population they are intended to represent and frequently used statistical models are not designed to analyze group differences when groups differ on relevant variables [14]. Addressing existing gaps and increasing the rigor and reproducibility of studies will require researchers report findings on 1) generalizable and representative samples, or 2) provide broader characterizations of the groups represented consistent with intersectional approaches, or 3) match groups on relevant sociodemographic variables [15], and/or apply statistical models which can help account for clinical group imbalances [16].
Advancing health disparities research and improving health outcomes for all individuals requires the involvement of everyone: governing bodies, funders, reviewers, researchers, and clinicians. Working together, we can communicate with consistent terminology, improve the integration of findings within and across disciplines by working within overlapping conceptual models, and enhance study sample characterization and representation with more informative approaches. Let us not allow the processes for deriving and reporting evidence to become one of the factors perpetuating health inequities.
References
1. Routen A, Lekas H-M, Harrison J, Khunti K. Intersectionality in health equity research. BMJ 2023;383:p2953. doi: 10.1136/bmj.p2953
2. Domenico LH, Tanner JJ, Mickle AM, et al. Environmental and sociocultural factors are associated with pain-related brain structure among diverse individuals with chronic musculoskeletal pain: intersectional considerations. Scientific Reports 2024;14(1):7796. doi: 10.1038/s41598-024-58120-9
3. National Institute of Health. NIH Policy on Reporting Race and Ethnicity Data: Subjects in Clinical Research. Office of Management and Budget 2001
4. Town M, Eke P, Zhao G, et al. Racial and Ethnic Differences in Social Determinants of Health and Health-Related Social Needs Among Adults — Behavioral Risk Factor Surveillance System. MMWR Morb Mortal Wkly Rep 2024;73:204-08. doi: http://dx.doi.org/10.15585/mmwr.mm7309a3
5. United Kingdom Government. Ethnicity facts and figures. List of ethnic groups, 2024.
6. Office for National Statistics. Ethnic group (detailed) classifications: Census 2021 2021 [updated 19 March 2024. Available from: https://www.ons.gov.uk/census/census2021dictionary/variablesbytopic/ethn... accessed April 2024.
7. World Health Organization. Operational Framework 2024 [Available from: https://www.who.int/initiatives/action-on-the-social-determinants-of-hea... accessed 25 March 2024.
8. Hill CV, Perez-Stable EJ, Anderson NA, Bernard MA. The National Institute on Aging Health Disparities Research Framework. Ethn Dis 2015;25(3):245-54. doi: 10.18865/ed.25.3.245 [published Online First: 2015/12/18]
9. Patel M, Johnson AJ, Booker SQ, et al. Applying the NIA Health Disparities Research Framework to Identify Needs and Opportunities in Chronic Musculoskeletal Pain Research. J Pain 2022;23(1):25-44. doi: 10.1016/j.jpain.2021.06.015 [published Online First: 2021/07/20]
10. Alvidrez J, Castille D, Laude-Sharp M, et al. The National Institute on Minority Health and Health Disparities Research Framework. American journal of public health 2019;109(S1):S16-s20. doi: 10.2105/ajph.2018.304883 [published Online First: 2019/01/31]
11. National Institue of Health. Whole Person Health: What You Need To Know https://www.nccih.nih.gov/health/whole-person-health-what-you-need-to-kn... [accessed October 2022.
12. Morris SE, Sanislow CA, Pacheco J, et al. Revisiting the seven pillars of RDoC. BMC Med 2022;20(1):220. doi: 10.1186/s12916-022-02414-0 [published Online First: 20220630]
13. Gatzke-Kopp L, Keil A, Fabiani M. Diversity and representation. Psychophysiology 2023;60(11):e14431. doi: 10.1111/psyp.14431
14. Miller GA, Chapman JP. Misunderstanding analysis of covariance. Journal of Abnormal Psychology 2001;110(1):40-48. doi: 10.1037/0021-843X.110.1.40
15. Thorpe RJ, Jr., McCleary R, Smolen JR, et al. Racial disparities in disability among older adults: finding from the exploring health disparities in integrated communities study. J Aging Health 2014;26(8):1261-79. doi: 10.1177/0898264314534892 [published Online First: 2014/12/17]
16. Satten GA, Kong M, Datta S. Multisample adjusted U-statistics that account for confounding covariates. Stat Med 2018;37(23):3357-72. doi: 10.1002/sim.7825 [published Online First: 20180619]
Authors
Kimberly Sibille, PhD, MA is a licensed clinical psychologist, an Associate Professor in the Department of Physical Medicine & Rehabilitation, College of Medicine at the University of Florida, and the Director of the Pain TRAIL - Translational Research in Assessment and Intervention Lab.
Angela Mickle, MS, CCRP is a Clinical Research Coordinator III in the Department of Physical Medicine & Rehabilitation, College of Medicine at the University of Florida, and the Manager and Data Analyst for the Pain TRAIL - Translational Research in Assessment and Intervention Lab.
Cynthia Garvan, MA, PhD is a biostatistician in the Department of Anesthesiology, College of Medicine at the University of Florida who specializes in medical statistics, large data organization, team organization, and research mentorship to clinical faculty.
Basma Mohamed, MD is an Associate Professor of Anesthesiology in the Divisions of Perioperative Medicine and Neuroanesthesia at the University of Florida with interests in outcome research and a passion for advancing patient care in perioperative medicine.
Carl V. Hill, Ph.D., MPH is the Chief Diversity, Equity and Inclusion Officer for the Alzheimer's Association, overseeing strategic initiatives to strengthen the Association's outreach to all populations, and providing communities with resources and support to address the Alzheimer's crisis.
Andreas Keil, PhD is a Distinguished Professor of Psychology at the University of Florida. His laboratory examines the building blocks of mental health at the levels of brain, body, and behavior.
Competing interests:
Authors have previously received or currently receive funding from the NIH.
11 April 2024
Kimberly T Sibille
Associate Professor
Angela Mickle, MS, CCRP; Cynthia Garvan, MA, PhD; Basma Mohamed, MD; Carl V. Hill, Ph.D., MPH;; Andreas Keil, PhD
Rapid Response:
Advancing Health Disparities Research and Improving Health for All
Dear Editor
Accolades to Routen and colleagues [1] for addressing the need to move health inequities research beyond single, heterogeneous, demographic categories by including a combination of variables to better understand the complex array of factors contributing to group differences. Intersectional approaches are readily compatible with population level studies and increasingly warranted in clinical studies [2]. We identify three additional areas that we believe will help to advance health disparities research. First, consistent terminology will improve the interpretation and comparability across studies. Second, organizing research efforts within recognized frameworks will enhance the integration of the findings across studies and inform clinical relevance. Third, study sample identification and statistical approaches play a significant role in the interpretability of findings.
Health inequities are evident across the world. Governing and funding bodies have guidelines to assist with the identification of common terminology that can be applied in clinical and research settings. For example, the National Institutes of Health (NIH) requires investigators to follow Federal Regulations (NOT-OD-01-053) on collecting, reporting, and presenting ethnic and race data, identified as sociopolitical constructs for all clinical research participants [3,4]. Somewhat similar, in the United Kingdom, guided by the Census of England and Wales, data are collected on group classifications of ethnic and heritage backgrounds [5 ,6]. Intersectional approaches will be further enhanced with the use of consistent terminology across studies.
Second, numerous frameworks are available to provide a conceptual infrastructure for integrating collective findings and informing evidence-based interpretations. The World Health Organization has a Social Determinants of Health Equity Operational Framework in development [7]. Additionally, several institutes at the NIH have developed frameworks and models relevant to health disparities research. The National Institute on Aging Health Disparities Research Framework was designed with the primary goal of evaluating areas of health disparities research that have been addressed and in what areas deficits remain [8 ,9]. The National Institute of Minority Health and Health Disparities Research Framework extends from the NIA Framework and incorporates components of the Bronfenbrenner Socioecological Model, depicting the complex interactions from the individual (micro) level to the societal (macro) level [10]. Further, the National Center for Complementary and Integrative Health Whole-Person Health Model identifies levels of analysis and domains of influence [11]. Similarly, the National Institute of Mental Health’s Research Domain Criteria Framework includes environmental factors and levels of analysis [12]. Collectively, the frameworks provide overlapping organization and terms applicable across disciplines.
Third, approaches to improve sample characterization and statistical techniques to strengthen the interpretation of evidence obtained are needed [13]. Inferring group differences requires a sample representative of the identified population. When the sample is not generalizable to the intended population, then additional characteristics of the sample are necessary to interpret findings specific to the group represented, consistent with an intersectional approach. Participants in clinical studies are often not representative and generalizable to the population they are intended to represent and frequently used statistical models are not designed to analyze group differences when groups differ on relevant variables [14]. Addressing existing gaps and increasing the rigor and reproducibility of studies will require researchers report findings on 1) generalizable and representative samples, or 2) provide broader characterizations of the groups represented consistent with intersectional approaches, or 3) match groups on relevant sociodemographic variables [15], and/or apply statistical models which can help account for clinical group imbalances [16].
Advancing health disparities research and improving health outcomes for all individuals requires the involvement of everyone: governing bodies, funders, reviewers, researchers, and clinicians. Working together, we can communicate with consistent terminology, improve the integration of findings within and across disciplines by working within overlapping conceptual models, and enhance study sample characterization and representation with more informative approaches. Let us not allow the processes for deriving and reporting evidence to become one of the factors perpetuating health inequities.
References
1. Routen A, Lekas H-M, Harrison J, Khunti K. Intersectionality in health equity research. BMJ 2023;383:p2953. doi: 10.1136/bmj.p2953
2. Domenico LH, Tanner JJ, Mickle AM, et al. Environmental and sociocultural factors are associated with pain-related brain structure among diverse individuals with chronic musculoskeletal pain: intersectional considerations. Scientific Reports 2024;14(1):7796. doi: 10.1038/s41598-024-58120-9
3. National Institute of Health. NIH Policy on Reporting Race and Ethnicity Data: Subjects in Clinical Research. Office of Management and Budget 2001
4. Town M, Eke P, Zhao G, et al. Racial and Ethnic Differences in Social Determinants of Health and Health-Related Social Needs Among Adults — Behavioral Risk Factor Surveillance System. MMWR Morb Mortal Wkly Rep 2024;73:204-08. doi: http://dx.doi.org/10.15585/mmwr.mm7309a3
5. United Kingdom Government. Ethnicity facts and figures. List of ethnic groups, 2024.
6. Office for National Statistics. Ethnic group (detailed) classifications: Census 2021 2021 [updated 19 March 2024. Available from: https://www.ons.gov.uk/census/census2021dictionary/variablesbytopic/ethn... accessed April 2024.
7. World Health Organization. Operational Framework 2024 [Available from: https://www.who.int/initiatives/action-on-the-social-determinants-of-hea... accessed 25 March 2024.
8. Hill CV, Perez-Stable EJ, Anderson NA, Bernard MA. The National Institute on Aging Health Disparities Research Framework. Ethn Dis 2015;25(3):245-54. doi: 10.18865/ed.25.3.245 [published Online First: 2015/12/18]
9. Patel M, Johnson AJ, Booker SQ, et al. Applying the NIA Health Disparities Research Framework to Identify Needs and Opportunities in Chronic Musculoskeletal Pain Research. J Pain 2022;23(1):25-44. doi: 10.1016/j.jpain.2021.06.015 [published Online First: 2021/07/20]
10. Alvidrez J, Castille D, Laude-Sharp M, et al. The National Institute on Minority Health and Health Disparities Research Framework. American journal of public health 2019;109(S1):S16-s20. doi: 10.2105/ajph.2018.304883 [published Online First: 2019/01/31]
11. National Institue of Health. Whole Person Health: What You Need To Know https://www.nccih.nih.gov/health/whole-person-health-what-you-need-to-kn... [accessed October 2022.
12. Morris SE, Sanislow CA, Pacheco J, et al. Revisiting the seven pillars of RDoC. BMC Med 2022;20(1):220. doi: 10.1186/s12916-022-02414-0 [published Online First: 20220630]
13. Gatzke-Kopp L, Keil A, Fabiani M. Diversity and representation. Psychophysiology 2023;60(11):e14431. doi: 10.1111/psyp.14431
14. Miller GA, Chapman JP. Misunderstanding analysis of covariance. Journal of Abnormal Psychology 2001;110(1):40-48. doi: 10.1037/0021-843X.110.1.40
15. Thorpe RJ, Jr., McCleary R, Smolen JR, et al. Racial disparities in disability among older adults: finding from the exploring health disparities in integrated communities study. J Aging Health 2014;26(8):1261-79. doi: 10.1177/0898264314534892 [published Online First: 2014/12/17]
16. Satten GA, Kong M, Datta S. Multisample adjusted U-statistics that account for confounding covariates. Stat Med 2018;37(23):3357-72. doi: 10.1002/sim.7825 [published Online First: 20180619]
Authors
Kimberly Sibille, PhD, MA is a licensed clinical psychologist, an Associate Professor in the Department of Physical Medicine & Rehabilitation, College of Medicine at the University of Florida, and the Director of the Pain TRAIL - Translational Research in Assessment and Intervention Lab.
Angela Mickle, MS, CCRP is a Clinical Research Coordinator III in the Department of Physical Medicine & Rehabilitation, College of Medicine at the University of Florida, and the Manager and Data Analyst for the Pain TRAIL - Translational Research in Assessment and Intervention Lab.
Cynthia Garvan, MA, PhD is a biostatistician in the Department of Anesthesiology, College of Medicine at the University of Florida who specializes in medical statistics, large data organization, team organization, and research mentorship to clinical faculty.
Basma Mohamed, MD is an Associate Professor of Anesthesiology in the Divisions of Perioperative Medicine and Neuroanesthesia at the University of Florida with interests in outcome research and a passion for advancing patient care in perioperative medicine.
Carl V. Hill, Ph.D., MPH is the Chief Diversity, Equity and Inclusion Officer for the Alzheimer's Association, overseeing strategic initiatives to strengthen the Association's outreach to all populations, and providing communities with resources and support to address the Alzheimer's crisis.
Andreas Keil, PhD is a Distinguished Professor of Psychology at the University of Florida. His laboratory examines the building blocks of mental health at the levels of brain, body, and behavior.
Competing interests: Authors have previously received or currently receive funding from the NIH.