Are We Serious about Addressing Health Disparities through Research?

Abstract

See related article, p 81In the context of the racial reckoning in the US, health disparities have become one of the compelling issues of our time. Within the hallowed halls of American hospitals, clinics, and medical schools, we recognize that health disparities are deeply embedded within our profession and we have committed to eliminate them. Despite this widespread commitment, the topic of health disparities is nevertheless frequently subject to misunderstandings, incorrect assumptions, and our conceptual framework is incomplete and inconsistently applied.To address health disparities, we must have an evidence-based understanding of the factors and mechanisms that culminate in these differences. Typically, we define health disparities based on race, ethnicity and, increasingly, social determinants of health, but these factors may not accurately represent the impact of discrimination or racism, which are also entrenched within American society. Furthermore, as we assess the global dimension of health disparities, it is not clear whether the scope or underlying mechanism(s) vary by country.Because data are essential for developing evidence-based approaches to health problems, including health disparities, in this volume of The Journal, Williams and Ross present their analysis of studies published in 3 major pediatrics journals during 2021.1Williams W.A. Ross L.F. The use of race, ethnicity, and social determinants of health in three pediatrics journals.J Pediatr. 2022; 247: 81-86Abstract Full Text Full Text PDF Scopus (2) Google Scholar The authors analyzed whether race, ethnicity, and social determinants of health were included in the research studies, how these variables were categorized, and whether the data on race, ethnicity, and social determinants were analyzed and interpreted. The findings are sobering and clearly define the magnitude of our challenge if we are sincerely committed to using research to address health disparities.Among 317 studies published during 2021, there were 116 unique categories of race and ethnicity reported by study investigators! Although data collection on race and ethnicity has been required since 1997 for studies which receive federal funding in the US, the study findings demonstrate the scope and impact of a lack of standard categories. For example, there were 12-16 categories used to define Asian, Black, Latino, or White participants. As American society and many others become increasingly diverse, it will become even more challenging to define clear and meaningful categories. Among the selected studies, there were 15 categories to describe participants with multiple ethnicity and 27 categories of “other” race or ethnicity. Ancestry and geography were analyzed by a handful of international studies; further study is needed to define whether these measures of heritage are more useful or accurate than self-reported race or ethnicity. Unless we define standard categories that can be consistently applied, our ability to compile and compare data will be limited, which will impair our ability to develop effective programs and policies.To identify, address, and prevent health disparities, the scientific community must commit to developing and utilizing a standard approach to assessing and interpreting data about race, ethnicity, social determinants, and health disparities. A recent report published by Grantmakers in Health and the National Committee for Quality Assurance assessed the state of data collection on race and ethnicity within health care programs and identified the lack of standards for such data as a major issue.2Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity. Grantmakers in Health and NCQA, 2021Google Scholar Although there are several factors that pose barriers to data collection, including concerns about privacy, the cost of collection, and resistance from patients, the lack of definitions and standardized collection procedures, coupled with a lack of analysis, were identified as significant considerations. Similarly, a 2022 National Academies study on sex and gender identity identified challenges related to data collection and recommended standardization.3Becker T. Chin M. Bates N. National Academies of Sciences, Engineering, and MedicineDivision of Behavioral and Social Sciences and EducationCommittee on National StatisticsCommittee on Measuring Sex, Gender Identity, and Sexual OrientationThe National Academies Collection: Reports funded by National Institutes of Health.in: Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press (US), National Academy of Sciences, Washington (DC)2022Google Scholar Thus, there is a growing awareness and recognition of the need to define standard categories, even as there is growing diversity along multiple axes of identity.The remarkable lack of consistency in the definition of racial and ethnic categories and the overall lack of data collection on the social determinants of health is one of Williams and Ross' most important findings. Coupled with a lack of interpretation of data on race, ethnicity, and social determinants in the discussion section of published studies, the authors identified gaps in scientific rigor that complicate our ability to understand and address disparities. Clearly, one cannot reconcile 116 categories of race/ethnicity into a comprehensive understanding of health disparities. Importantly, the failure to interpret data on race, ethnicity, and social determinants can perpetuate health disparities. To achieve the goal of standardization and implementation of standards, the research community must define the appropriate definitions, categories, and data collection procedures. Subsequently, funding organizations should ensure that investigators are following the established standards for data collection and interpretation. Funders and publishers have a uniquely impactful role to promote a systematic approach to analyzing and interpreting data related to race, ethnicity, and social determinants because they are gatekeepers of funding and dissemination. Despite the longstanding requirement for collection of race and ethnicity data within federally funded studies in the US, the gap between data collection, analysis, and interpretation, documented clearly by Williams and Ross, suggests that investigators comply with the “letter,” but not the spirit, of the federal directive. This gap facilitates both over- and under-attribution of the role of race and ethnicity on a range of outcomes. Until researchers consistently collect information on race and ethnicity in a standardized fashion and analyze and interpret such data within a robust conceptual framework, we will not succeed in advancing our understanding of health disparities in a meaningful way. As research findings are generated, organizations, which sponsor conferences and journals, should also insist that authors adhere to standardized approaches to data collection, reporting, and interpretation.Williams and Ross also reported international differences in the collection and analysis of data on race and ethnicity. Studies based on US participants were much more likely to report information on race and ethnicity than studies from other countries, suggesting that American researchers are more attuned to, focused upon, or required to collect such information. However, only one-quarter of American studies and 10% of international studies analyzed the impact of race or ethnicity on their study findings, and even fewer reported on or interpreted the impact of social determinants on their findings. Comparative studies will be useful to define the global impact of health disparities, develop standard definitions, and identify effective mitigation strategies.Given the complexity of defining race, ethnicity, and social determinants of health, pediatricians and other child health researchers must collaborate with researchers in epidemiology, sociology, public policy, and other fields to test and develop new conceptual models. As trainees learn how to frame research questions and address important questions, they must understand the importance of health disparities and integrate a focus on these issues within their scholarly area. Issues of health disparities transcend all areas of child health and there is an urgent need to apply a disparities lens to pediatric subspecialty issues.Are we serious about using data and research to address health disparities? Based on Williams and Ross' summary of recent pediatric studies published in 3 prominent pediatric journals, we face a serious gap in commitment, conceptualization, and methodology. I support the recommendation of Williams and Ross that we should implement standard categories of race, ethnicity, and the social determinants of health, coupled with a requirement that investigators apply evidence-based conceptual models to guide the analysis and interpretation of such data. I am optimistic that these changes will allow us to clearly characterize health disparities, define the factors or pathways that contribute to or culminate in disparities, and develop effective strategies to mitigate and prevent disparities. However, we must expand our conceptual models to consider the role of racism and discrimination and assess whether conceptual models can be universally applied. As pediatricians and pediatric researchers, we serve the most diverse segment of society and we must embrace the challenge of applying research scholarship to eliminate health disparities. See related article, p 81 See related article, p 81 See related article, p 81 In the context of the racial reckoning in the US, health disparities have become one of the compelling issues of our time. Within the hallowed halls of American hospitals, clinics, and medical schools, we recognize that health disparities are deeply embedded within our profession and we have committed to eliminate them. Despite this widespread commitment, the topic of health disparities is nevertheless frequently subject to misunderstandings, incorrect assumptions, and our conceptual framework is incomplete and inconsistently applied. To address health disparities, we must have an evidence-based understanding of the factors and mechanisms that culminate in these differences. Typically, we define health disparities based on race, ethnicity and, increasingly, social determinants of health, but these factors may not accurately represent the impact of discrimination or racism, which are also entrenched within American society. Furthermore, as we assess the global dimension of health disparities, it is not clear whether the scope or underlying mechanism(s) vary by country. Because data are essential for developing evidence-based approaches to health problems, including health disparities, in this volume of The Journal, Williams and Ross present their analysis of studies published in 3 major pediatrics journals during 2021.1Williams W.A. Ross L.F. The use of race, ethnicity, and social determinants of health in three pediatrics journals.J Pediatr. 2022; 247: 81-86Abstract Full Text Full Text PDF Scopus (2) Google Scholar The authors analyzed whether race, ethnicity, and social determinants of health were included in the research studies, how these variables were categorized, and whether the data on race, ethnicity, and social determinants were analyzed and interpreted. The findings are sobering and clearly define the magnitude of our challenge if we are sincerely committed to using research to address health disparities. Among 317 studies published during 2021, there were 116 unique categories of race and ethnicity reported by study investigators! Although data collection on race and ethnicity has been required since 1997 for studies which receive federal funding in the US, the study findings demonstrate the scope and impact of a lack of standard categories. For example, there were 12-16 categories used to define Asian, Black, Latino, or White participants. As American society and many others become increasingly diverse, it will become even more challenging to define clear and meaningful categories. Among the selected studies, there were 15 categories to describe participants with multiple ethnicity and 27 categories of “other” race or ethnicity. Ancestry and geography were analyzed by a handful of international studies; further study is needed to define whether these measures of heritage are more useful or accurate than self-reported race or ethnicity. Unless we define standard categories that can be consistently applied, our ability to compile and compare data will be limited, which will impair our ability to develop effective programs and policies. To identify, address, and prevent health disparities, the scientific community must commit to developing and utilizing a standard approach to assessing and interpreting data about race, ethnicity, social determinants, and health disparities. A recent report published by Grantmakers in Health and the National Committee for Quality Assurance assessed the state of data collection on race and ethnicity within health care programs and identified the lack of standards for such data as a major issue.2Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity. Grantmakers in Health and NCQA, 2021Google Scholar Although there are several factors that pose barriers to data collection, including concerns about privacy, the cost of collection, and resistance from patients, the lack of definitions and standardized collection procedures, coupled with a lack of analysis, were identified as significant considerations. Similarly, a 2022 National Academies study on sex and gender identity identified challenges related to data collection and recommended standardization.3Becker T. Chin M. Bates N. National Academies of Sciences, Engineering, and MedicineDivision of Behavioral and Social Sciences and EducationCommittee on National StatisticsCommittee on Measuring Sex, Gender Identity, and Sexual OrientationThe National Academies Collection: Reports funded by National Institutes of Health.in: Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press (US), National Academy of Sciences, Washington (DC)2022Google Scholar Thus, there is a growing awareness and recognition of the need to define standard categories, even as there is growing diversity along multiple axes of identity. The remarkable lack of consistency in the definition of racial and ethnic categories and the overall lack of data collection on the social determinants of health is one of Williams and Ross' most important findings. Coupled with a lack of interpretation of data on race, ethnicity, and social determinants in the discussion section of published studies, the authors identified gaps in scientific rigor that complicate our ability to understand and address disparities. Clearly, one cannot reconcile 116 categories of race/ethnicity into a comprehensive understanding of health disparities. Importantly, the failure to interpret data on race, ethnicity, and social determinants can perpetuate health disparities. To achieve the goal of standardization and implementation of standards, the research community must define the appropriate definitions, categories, and data collection procedures. Subsequently, funding organizations should ensure that investigators are following the established standards for data collection and interpretation. Funders and publishers have a uniquely impactful role to promote a systematic approach to analyzing and interpreting data related to race, ethnicity, and social determinants because they are gatekeepers of funding and dissemination. Despite the longstanding requirement for collection of race and ethnicity data within federally funded studies in the US, the gap between data collection, analysis, and interpretation, documented clearly by Williams and Ross, suggests that investigators comply with the “letter,” but not the spirit, of the federal directive. This gap facilitates both over- and under-attribution of the role of race and ethnicity on a range of outcomes. Until researchers consistently collect information on race and ethnicity in a standardized fashion and analyze and interpret such data within a robust conceptual framework, we will not succeed in advancing our understanding of health disparities in a meaningful way. As research findings are generated, organizations, which sponsor conferences and journals, should also insist that authors adhere to standardized approaches to data collection, reporting, and interpretation. Williams and Ross also reported international differences in the collection and analysis of data on race and ethnicity. Studies based on US participants were much more likely to report information on race and ethnicity than studies from other countries, suggesting that American researchers are more attuned to, focused upon, or required to collect such information. However, only one-quarter of American studies and 10% of international studies analyzed the impact of race or ethnicity on their study findings, and even fewer reported on or interpreted the impact of social determinants on their findings. Comparative studies will be useful to define the global impact of health disparities, develop standard definitions, and identify effective mitigation strategies. Given the complexity of defining race, ethnicity, and social determinants of health, pediatricians and other child health researchers must collaborate with researchers in epidemiology, sociology, public policy, and other fields to test and develop new conceptual models. As trainees learn how to frame research questions and address important questions, they must understand the importance of health disparities and integrate a focus on these issues within their scholarly area. Issues of health disparities transcend all areas of child health and there is an urgent need to apply a disparities lens to pediatric subspecialty issues. Are we serious about using data and research to address health disparities? Based on Williams and Ross' summary of recent pediatric studies published in 3 prominent pediatric journals, we face a serious gap in commitment, conceptualization, and methodology. I support the recommendation of Williams and Ross that we should implement standard categories of race, ethnicity, and the social determinants of health, coupled with a requirement that investigators apply evidence-based conceptual models to guide the analysis and interpretation of such data. I am optimistic that these changes will allow us to clearly characterize health disparities, define the factors or pathways that contribute to or culminate in disparities, and develop effective strategies to mitigate and prevent disparities. However, we must expand our conceptual models to consider the role of racism and discrimination and assess whether conceptual models can be universally applied. As pediatricians and pediatric researchers, we serve the most diverse segment of society and we must embrace the challenge of applying research scholarship to eliminate health disparities. The Use of Race, Ethnicity, and Social Determinants of Health in Three Pediatrics JournalsThe Journal of PediatricsVol. 247PreviewTo evaluate how race, ethnicity, and social determinants of health (SDOH) are reported and discussed in 3 pediatrics journals. Full-Text PDF