eMethods. Literature Searches
eTable 1. Reviews of Interventions to Address Health Inequities and Racism
eTable 2. Professional Organizations’ Statements, Frameworks, etc., Related to Racism and Health Equity
eTable 3. GRADE Working Group Recommendations and relevance to the USPSTF
Customize your JAMA Network experience by selecting one or more topics from the list below.
Lin JS, Hoffman L, Bean SI, et al. Addressing Racism in Preventive Services: Methods Report to Support the US Preventive Services Task Force. JAMA. 2021;326(23):2412–2420. doi:10.1001/jama.2021.17579
In January 2021, the US Preventive Services Task Force (USPSTF) issued a values statement that acknowledged systemic racism and included a commitment to address racism and health equity in recommendations for clinical preventive services.
To articulate the definitional and conceptual issues around racism and health inequity and to describe how racism and health inequities are currently addressed in preventive health.
An audit was conducted assessing (1) published literature on frameworks or policy and position statements addressing racism, (2) a subset of cancer and cardiovascular topics in USPSTF reports, (3) recent systematic reviews on interventions to reduce health inequities in preventive health or to prevent racism in health care, and (4) health care–relevant professional societies, guideline-making organizations, agencies, and funding bodies to gather information about how they are addressing racism and health equity.
Race as a social category does not have biological underpinnings but has biological consequences through racism. Racism is complex and pervasive, operates at multiple interrelated levels, and exerts negative effects on other social determinants and health and well-being through multiple pathways. In its reports, the USPSTF has addressed racial and ethnic disparities, but not racism explicitly. The systematic reviews to support the USPSTF include interventions that may mitigate health disparities through cultural tailoring of behavioral interventions, but reviews have not explicitly addressed other commonly studied interventions to increase the uptake of preventive services or foster the implementation of preventive services. Many organizations have issued recent statements and commitments around racism in health care, but few have provided substantive guidance on operational steps to address the effects of racism. Where guidance is unavailable regarding the proposed actions, it is principally because work to achieve them is in very early stages. The most directly relevant and immediately useful guidance identified is that from the GRADE working group.
Conclusions and Relevance
This methods report provides a summary of issues around racism and health inequity, including the status of how these are being addressed in preventive health.
In 2020, following the deaths of George Floyd, Ahmaud Arbery, and Breonna Taylor, the US Preventive Services Task Force (USPSTF) established a Race and Racism work group. This work group issued a values statement for the USPSTF that directly acknowledged that systemic racism prevents many people of color from fully benefiting from their recommended clinical preventive services and also denounced racism in all forms against any group of people.1 As part of this statement, the USPSTF made commitments to address racism and health equity. In support of these commitments, this methods study was conducted to help the USPSTF understand how racism may be preventing it from achieving its prevention goals and how to evolve the USPSTF reports to more directly address racism and health inequities by race and ethnicity.
Working with the USPSTF and the Agency for Healthcare Research and Quality (AHRQ), 2 aims were operationalized into answerable questions given the time frame and resources allotted (Box). The main findings are presented in this article. The full report2 has additional details on the methods, findings, and limitations.
Question 1. What are the key terms and concepts around the discussion of racism and health inequities? How are these terms and concepts defined and applied (eg, race, racism, health inequities, social determinants of health [SDH])? How are these terms interrelated?
Question 2. How does racism produce health inequities? What are the mechanisms of action?
Question 3. How are racism and health inequities addressed in current USPSTF reports?
Question 4. What types of interventions can reduce health inequities by race in preventive health?
Question 5. What types of interventions directly address racism in health care?
Question 6. What work are other health and health care institutions/organizations doing to address racism?
To address Questions 1 and 2, an audit was conducted of the published literature identified through a search conducted September 2020 for articles that presented social frameworks and models or policy and position statements that addressed racism (eMethods in the Supplement).
To address Question 3, an audit was conducted of a subset of the current USPSTF reports in October 2020, focusing on cancer and cardiovascular topics because of limitations in both time and resources. For each topic, both the recommendation statement and supporting evidence documents were audited to assess if race, racism, or both were addressed in the document(s); where and how they were addressed; if health disparities were described for the risk factors, disease/condition, or morbidity/mortality from disease; if the mechanism for health disparities/inequities was described; and if there was any evidence to support differential benefits or harms by race and ethnicity.
To address Questions 4 and 5, searches through November 2020 were conducted for recent systematic reviews that would address these questions (eMethods in the Supplement). For Question 4, which addressed interventions to reduce health inequities by race in preventive health, the focus was on interventions to increase the uptake of cancer and cardiovascular-related preventive services to match the focus of Question 3. The searches aimed to identify patient-level interventions (eg, to increase the uptake of preventive services, to tailor a preventive service to improve its effectiveness) and interventions at the health system level or aimed at clinicians designed to reduce health inequities, specifically address racism, or both.
To address Question 6, an audit was conducted from November 2020 through March 2021 of health care and health care–relevant professional societies, guideline-making organizations, agencies, and funding bodies to gather information about how they are addressing race, racism, and health equity (eg, terminology, strategies, methods). This audit primarily focused on entities in the US and selected high-income countries when relevant. The websites of 95 agencies, professional medical associations, and other health care–relevant organizations were reviewed for race, racism, and health equity content. For organizations that develop guidelines, there was a search for information on the organizations’ methods for addressing racism and health inequity in their guidelines by examining their methods/procedures manuals, when available.
Aim 1. To articulate the definitional and conceptual issues around racism and health inequities
Race is a complex classification that has been socially, politically, and legally constructed over the past 5 centuries.3 Although once believed to be rooted in biology, anthropology, and genetics, race is not an accurate representation of human biological variation or of evolutionarily independent lineages.3-9 In recent years, several scientific and medical organizations have issued policy statements recognizing race as a social construct, rather than a biological one.3,10,11 Race as a social category does not have biological underpinnings. However race, through racism, has real biological consequences.12
The concept of race emerged from, and in support of, European colonialism, oppression, exploitation, and discrimination.3 Racial ideology initially sought to divide and rank people of European, Native American, and African descent by ascribing significance to observable physical differences and similarities. Currently, 5 racial categories are recognized and defined by the US Office of Management and Budget and adopted by federal agencies, such as the National Institutes of Health (Table 1).15
Ethnicity refers to a collection of people who share a common ancestry, history, or culture.14 Ethnicity is a broader social category than race and encompasses a wide range of learned cultural characteristics including language, religion, traditions, diet, values, and norms as well as memories of migration or colonization.16,17 People can identify as more than 1 ethnic group (eg, Cuban American, Black Caribbean, Italian or Roman Jewish). Currently, only 2 ethnic categories are recognized and defined by the Office of Management and Budget: people of Hispanic/Latino origin (ie, a person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin), and people not of Hispanic/Latino origin.13
Race and ethnicity are complex terms that are often used interchangeably with little to no definition.16-18 However, they carry different meanings and are not synonymous. Although there is no consensus on preferred terminology, consistent themes regarding how racial and ethnic groups are described are19-23:
Avoid the use of Black and White as nouns (ie, Whites). Instead, use Black people or White people, or Black men and White men, etc.
Err on the side of using Latino, Latina, or, if referring to a gender-neutral population, Latinx rather than Hispanic (although this was not a universal recommendation).
Avoid nonparallel comparisons (eg, African American vs White).
Avoid the term Caucasian to indicate White, as it is specific to people from the Caucasus region in Eurasia.
Refer to the terminology suggested by American Psychological Association19 when describing Asian and Native populations (eg, Asian American, Alaska Native).
Guidance in the reviewed literature indicates that it is preferable to be specific when referring to groups of people. For example, if the meaning is to describe Black and Latinx populations, this should be specified rather than referring to these groups collectively as “diverse” populations. When referring to other than White racial and ethnic groups collectively, using terms such as people of color or racially minoritized may be preferable to terms like non-White, minority, or disadvantaged populations.19,21,24 However, there is no universally agreed-on preferred term, and the terminology in this field continues to evolve. A brief overview of guidance regarding language preferences for specific racial and ethnic categories is presented in Table 2.
Racism is an organized social system in which the dominant racial group uses its power to devalue, disempower, and differentially allocate valued resources and opportunities to a racial group or racial groups considered inferior.25,26 Racism can manifest in many ways (eg, beliefs, stereotypes, prejudices, discrimination) and at many levels (eg, institutional, interpersonal) within a society. Various categorizations have been used to conceptualize different forms of racism (Table 3).
Health disparities refer to differences in health outcomes across populations. Health disparities are not always due to inequity; however, the term is often used synonymously with health inequity to signify important differences in health outcomes or health determinants between populations (eg, by race and ethnicity) due to inequity or injustice.4 Although there are many circulating definitions of health inequity,38-41 they converge on the same concepts: (1) health equity is a fundamental human right, (2) differences in health or health determinants are avoidable or remediable (ie, due to plausibly avoidable social, economic, or other disadvantage), (3) differences in health or health determinants are among groupings defined socially, economically, demographically, or geographically, and (4) differences in health or health determinants are clinically meaningful.
Social determinants of health include race and ethnicity (and immigration status), racism (eg, discrimination, residential segregation), and the downstream consequences of racism (eg, education, financial strain, health behaviors, health care access, incarceration). Both Healthy People 2020 and the World Health Organization (WHO) similarly define SDH as conditions in which people are born, live, work, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.38,42 The uneven distribution of SDH, sometimes referred to as social inequities in health, results in health disparities. The WHO Commission on SDH has a conceptual framework that illustrates how deeply embedded, structural determinants (institutions, policies, societal values) affect health equity and well-being in a society.43
There is a large and growing body of evidence that (1) racism creates health inequities, (2) racially stigmatized populations have worse health than White counterparts, and (3) racism is built into medicine and health.26,44-46 Understanding the mechanisms by which differences in race and ethnicity and racism can affect health, and their determinants, is a prerequisite to finding solutions to achieve greater health equity. The mechanisms producing health inequities are varied, ranging from differences in disease awareness, attitudes, and beliefs (eg, mistrust, religious/cultural beliefs) to differences in access to the full continuum of care and the quality of care received. Racism specifically can affect health via several recognized pathways, not limited to (1) reduced access to employment, housing, optimal health care, and education or increased exposure to risk factors (eg, occupational or environmental risk, inequitable legal enforcement); (2) adverse cognitive, psychological, and emotional effects and processes; (3) allostatic load (ie, cumulative wear and tear on physiologic systems and organs due to adversity or stress) and neurobiological response (eg, hypothalamaic-pituitary-adrenal axis) to chronic stressors; (4) diminished participation in healthy behaviors (eg, sleep, exercise) or increased engagement in unhealthy behaviors (eg, alcohol consumption), either directly or indirectly resulting from stressors due to racism or racially targeted marketing; and (5) physical injury as a result of racially motivated violence.44,47
Several frameworks, like the aforementioned framework by the WHO Commission on SDH,43 have been described to articulate how racism produces health inequities. Other frameworks are more singularly focused on race and racism.47-50 One of these comprehensive frameworks, by Williams et al,26 articulates the multiple pathways by which racism can affect health, recognizing that racism is one of several fundamental determinants of health (emphasizing institutional and cultural racism). This framework is structurally similar to the WHO SDH framework but provides more detail specific to the effects of racism. It also emphasizes the importance of distinguishing fundamental (“basic”) causes from surface or intervening causes. This highlights that interventions aimed at changing intervening rather than fundamental causes are unlikely to produce long-term improvements in population health.
Aim 2. To describe how racism and health inequities are currently being addressed in preventive health
Question 3. How are racism and health inequities addressed in the current USPSTF reports?
An audit was conducted of 27 topics within USPSTF reports that included screening, counseling, and chemoprevention recommendations for cancer and cardiovascular topics (cardiovascular disease, diabetes, hypertensive disorders, and obesity). Nineteen of the 27 topics addressed race or ethnicity in the recommendation statement, and 25 of them mentioned race or ethnicity in the evidence review. Overall, most of the topics addressed racial and ethnic health disparities in prevalence and incidence of the disease or condition, risk factors for the disease, and morbidity or mortality from the disease, although with varying detail. Few topics addressed race or ethnicity regarding current practice or uptake in preventive services, although the evidence report for screening for prostate cancer (2018) notes that differential adherence to diagnostic follow-up may account for some of the disparities.51 Only 8 topics articulated possible mechanisms for racial and ethnic disparities; 5 of these were cancer topics, 2 were maternal topics on preeclampsia screening and preeclampsia treatment, and 1 was a pediatric topic on screening for obesity. Only 1 topic (low-dose aspirin use for preventing preeclampsia) directly mentioned the role of racism, stating in the evidence review that “systemic racial biases in health care are thought to contribute to the greater risk and worse outcomes of preeclampsia for Black women.”52
While many topics explicitly included questions on the differences or variation of outcomes by race or ethnicity, in most cases, limited reporting or sparse representation of these populations in included studies prevented any meaningful analysis. Despite the lack of available evidence by race and ethnicity, only 5 recommendation statements and 5 systematic reviews explicitly mentioned the need for more research including specific racial and ethnic groups.
There was significant variation in the language used for racial and ethnic categories in the recommendation statements and supporting evidence documents (eg, African American vs Black people, Native American vs American Indian individuals). While some of this variation may be related to the inconsistency in terminology among the primary studies referenced, the differences in terminology may not be intentional, and it is not apparent when and if the variation in terminology is purposeful.
A large and growing body of literature has examined interventions to improve care for people of color or underrepresented populations as well as to address health disparities by race and ethnicity (eTable 1 in the Supplement).53-55 The most commonly studied delivery arrangements or implementation strategies relevant to cancer and cardiovascular disease prevention included culturally targeted and tailored lifestyle and self-management interventions; community health workers and patient navigators; patient outreach; improving access to care (eg, through integration of services, or case management); development and use of care pathways; use of information and communication technology; and clinician education and training. Although the number of studies, study designs, strength of evidence, populations studied, and outcomes assessed varied across these bodies of evidence, there was evidence to suggest that each of these types of interventions can improve various outcomes (health care utilization, behavioral outcomes, clinical disease indicators [eg, hemoglobin A1c levels], screening rates). However, there is still limited evidence on evaluating if these types of interventions can reduce health disparities between populations, and there are examples illustrating the potential of these interventions to exacerbate disparities. For example, in a review of the effect of preventive health interventions in populations adversely affected by disparities, a small number of studies of interventions to increase colorectal cancer screening, such as print materials with or without telephone counseling, showed greater benefits in “non-Black” populations than in Black populations.53
Many of the above interventions aimed at reducing health disparities by race and ethnicity, while not designed explicitly to target racism or its effects on health, address downstream effects of racism directly or indirectly. In addition, there was a body of evidence on the effect of cultural sensitivity (previously referred to as cultural competence) training in health professionals that may reduce interpersonal racism. However, few studies appear to report patient outcomes or objective assessments of cultural sensitivity of clinicians when interacting with patients.56-60
One review identified 18 cultural sensitivity frameworks, but only 13 studies reported empirical data, suggesting this field is still in the formative stage.61
In the audit of various organizations, several groups were identified that provided substantial guiding principles or policy statements on addressing racism and health equity (eTable 2 in the Supplement). In general, the organizations that have taken their efforts beyond simple statements of awareness or concern describe taking action in accordance with recognizing the importance of terminology. Additionally, these organizations are voicing the need to ensure diversity in their leadership and staff and to develop expertise in antiracism. Resources with the most potential identified recognized that making real progress in improving equity in health care requires a foundational, comprehensive approach, with accountability.
Overall, the Proposed USPSTF Actions to Address Racism in Clinical Preventive Services Recommendations1 are thorough and reflect what was observed in the audit. For example, regarding plans to “seek to partner with guideline making bodies, professional societies, policy makers, and patient advocacy organizations”:
The American Cancer Society identified partnerships as one of its 3 main categories of Health Equity Principles62;
The American Gastroenterological Association (AGA) includes a commitment to “coalition building with other organizations who are working toward incorporating anti-racism as a strategy to improve diversity and reduce disparities” within its framework63; and
The American Society of Clinical Oncology (ASCO) recommends “partnering with local communities and legislatures to support implementation of activities and application of research findings known to improve health equity.”64
The USPSTF has also tasked itself with “routinely highlighting evidence gaps related to race and racism for each clinical preventive service” and “calling for additional research for addressing systemic racism to improve delivery of preventive services.”1 Similarly, in the American College of Physicians (ACP) policy framework, it is stated that the “ACP believes that more research and data collection related to racial and ethnic health disparities are needed to empower policymakers and stakeholders to better understand and address the problem of disparities.”64,65
The USPSTF plans to “develop, integrate, and iteratively refine a health equity framework.”1 Particularly relevant examples of frameworks from other organizations are the following:
Institute for Healthcare ImprovementAchieving Health Equity: A Guide for Health Care Organizations66
ACPPolicy Framework to Understand and Address Disparities and Discrimination in Health and Health Care65
AGAFrom Intention to Action: Operationalizing AGA Diversity Policy to Combat Racism and Health Disparities in Gastroenterology63
Similar to other organizations, the USPSTF mentions critical gaps to address. For example, methods “to identify systemic racism as a causal factor for variations in prevalence and outcomes” are in early stages of development.1 Similarly, identifying the types of studies and outcomes needed to address systemic racism is being called for now, including in efforts such as the National Institute of Health UNITE initiative,67 the ACP framework,65 and the ASCO recommendations.64
Published guidance on incorporating health equity in clinical practice guidelines and systematic reviews is still quite limited. The most comprehensive guidance comes from the Grading of Recommendations Assessment, Development and Evaluation (GRADE) working group. In their Evidence to Decision Framework, developed to allow for explicit and transparent articulation of the important criteria that decision makers (ie, clinicians, guideline developers, and policy makers) use to inform their judgements, GRADE includes 1 domain called “health equity” that asks, “what would be the effect on health equity” of any given decision or recommendation.68 To answer this question, the framework articulates a set of questions to be answered:
“Are there groups or settings that might be disadvantaged in relation to the problem or interventions (options) that are considered?
Are there plausible reasons for anticipating differences in the relative effectiveness of the intervention (option) for disadvantaged groups or settings?
Are there different baseline conditions across groups or settings that affect the absolute effectiveness of the intervention or the importance of the problem for disadvantaged groups or settings?
Are there important considerations that should be made when implementing the intervention (option) to ensure that inequities are reduced, if possible, and that they are not increased?”
In addition to their guidance on the Evidence to Decision Framework, the GRADE working group issued a 4-article series in 2017 that provided additional guidance on how guideline panels should incorporate health equity considerations at various phases of the guideline process: setting priorities, establishing guideline group membership, identifying target audiences, generating guideline questions, considering the importance of outcomes and interventions, deciding what evidence to include and searching for evidence, summarizing the evidence and considering additional information, wording of recommendations, and evaluating and monitoring use of the recommendation (eTable 3 in the Supplement).69-72
To address health equity in the US, it is necessary to continue to use racial and ethnic groupings as categorizations. However, the categorizations should be understood as social categorizations with true biological consequences through racism. Racism is complex and pervasive, and operates at multiple interrelated levels. Discrimination is only 1 aspect of racism, albeit the most studied domain of racism in health literature. Likewise, racism exerts its negative effects on SDH as well as health and well-being through multiple pathways. There are useful frameworks that describe the various mechanisms by which race and racism affect health.
In its reports, the USPSTF has addressed racial and ethnic disparities and health equity but not racism explicitly. The recommendation statements and the products that support the recommendation statements have used a variety of terminology and likewise have varied in their treatment of health equity. The systematic reviews to support the USPSTF do include interventions that may mitigate health disparities through cultural tailoring of behavioral interventions, but reviews have not explicitly addressed other commonly studied interventions to increase the uptake of preventive services or foster the implementation of preventive services. To date, other than interventions to improve cultural sensitivity of clinicians, there are not robustly studied interventions to directly address racism in medicine or health care.
Many organizations have issued recent statements and commitments around racism in health care, but few have provided substantive guidance on operational steps to address the effects of racism. The Proposed USPSTF Actions to Address Racism in Clinical Preventive Services Recommendations outlined in January 20211 are largely in line with guidance from the small group of organizations that have articulated plans for meaningful and long-term action on addressing racism in health care. When guidance is unavailable regarding the proposed actions, it is principally because work to achieve them is in early stages. The most directly relevant and immediately useful guidance identified is that from the GRADE working group.
This methods review has several limitations. First, to our knowledge this is the first systematic effort to understand how race, and more specifically racism, and health inequities in racial and ethnic groups are addressed and can be addressed in USPSTF reports. Given that this is a rapidly evolving field, with many new publications, webinars, and ongoing efforts to address racism in health care and health inequities by race and ethnicity, this report can only represent a snapshot of the evidence to date. Second, for Aim 1, there was not a comprehensive summary of the effect of racism on health, nor was there a review of how racism is embedded in medicine and health care. Third, for Aim 2, the audit of the USPSTF reports and literature on interventions to mitigate health inequities focused on cancer and cardiovascular disease. While these are 2 large content areas in USPSTF reports and preventive health, there are other topics among USPSTF reports that are different enough to warrant investigating separately (eg, mental health and substance abuse, infectious disease). Fourth, other than health care coverage and workforce diversification, the focus was on patient and health-system level interventions and did not examine reviews on interventions at the community, public health, and policy levels, nor was there an examination of medical or other health professional school curricula interventions or interventions to encourage people of color to enter the health care field. Fifth, interventions to increase recruitment of underrepresented individuals in clinical research were not included, but this information will be important to improve the evidence base to address health equity. Sixth, the literature search process was restricted to MEDLINE, likely omitting relevant citations with a social science focus. Seventh, the review took a pragmatic approach to identify and audit health care and health care-relevant professional societies, guideline-making organizations, agencies, and funding bodies, given limited time and resources.
This methods report provides a summary of issues around racism and health inequity, including the status of how these are being addressed in preventive health.
Corresponding Author: Jennifer S. Lin, MD, Kaiser Permanente Evidence-based Practice Center, Center for Health Research, Kaiser Permanente Northwest, 3800 N Interstate Ave, Portland, OR 97227 (firstname.lastname@example.org).
Accepted for Publication: September 17, 2021.
Published Online: November 8, 2021. doi:10.1001/jama.2021.17579
Author Contributions: Dr Lin and Ms Hoffman had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Lin, Hoffman, O'Connor, Martin, Iacocca.
Acquisition, analysis, or interpretation of data: Lin, Hoffman, Bean, O'Connor, Martin, Bacon, Davies.
Drafting of the manuscript: Lin, Hoffman, Bean, Martin, Iacocca, Bacon.
Critical revision of the manuscript for important intellectual content: Hoffman, O'Connor, Martin, Davies.
Obtained funding: Lin, Hoffman.
Administrative, technical, or material support: Hoffman, Bean, Martin, Iacocca, Bacon, Davies.
Conflict of Interest Disclosures: None reported.
Funding/Support: This research was funded under contract HHSA290201600006C from the Agency for Healthcare Research and Quality (AHRQ), US Department of Health and Human Services, to support the US Preventive Services Task Force (USPSTF).
Role of the Funder/Sponsor: Investigators worked with USPSTF members and AHRQ staff to develop the scope of this review. AHRQ had no role in study selection or synthesis. AHRQ staff provided project oversight and reviewed the report to ensure that the analysis met methodological standards. Otherwise, AHRQ had no role in the conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript findings. The opinions expressed in this document are those of the authors and do not reflect the official position of AHRQ or the US Department of Health and Human Services.
Additional Contributions: We gratefully acknowledge the following individuals for their contributions to this project: the AHRQ staff; the US Preventive Services Task Force; and Evidence-based Practice Center staff members Tracy Beil, MS, and Debra Burch for their administrative support.
Editorial Disclaimer: This methods report is presented as a document in support of the accompanying USPSTF statement. It did not undergo additional peer review after submission to JAMA.