Importance
US life expectancy and health outcomes for preventable causes of disease have continued to lag in many populations that experience racism.
Objective
To propose iterative changes to US Preventive Services Task Force (USPSTF) processes, methods, and recommendations and enact a commitment to eliminate health inequities for people affected by systemic racism.
Design and Evidence
In February 2021, the USPSTF began operational steps in its work to create preventive care recommendations to address the harmful effects of racism. A commissioned methods report was conducted to inform this process. Key findings of the report informed proposed updates to the USPSTF methods to address populations adversely affected by systemic racism and proposed pilots on implementation of the proposed changes.
Findings
The USPSTF proposes to consider the opportunity to reduce health inequities when selecting new preventive care topics and prioritizing current topics; seek evidence about the effects of systemic racism and health inequities in all research plans and public comments requested, and integrate available evidence into evidence reviews; and summarize the likely effects of systemic racism and health inequities on clinical preventive services in USPSTF recommendations. The USPSTF will elicit feedback from its partners and experts and proposed changes will be piloted on selected USPSTF topics.
Conclusions and Relevance
The USPSTF has developed strategies intended to mitigate the influence of systemic racism in its recommendations. The USPSTF seeks to reduce health inequities and other effects of systemic racism through iterative changes in methods of developing evidence-based recommendations, with partner and public input in the activities to implement the advancements.
The US Preventive Services Task Force (USPSTF) is an independent body that works to improve health outcomes for all people in the US through evidence-based preventive care recommendations, via a rigorous review of existing evidence assessing the effects of clinical preventive services on peoples’ health and quality of life.1,2 The USPSTF adheres to transparent processes that are continually refined to ensure the trustworthiness of recommendations.3,4
Significant issues affect evaluating the net benefits of preventive services. First, continued evidence of inequities in the delivery of preventive services persist for groups that experience racism.5 Second, across preventive services, the evidence is often from studies with primarily White and male research participants. Foundational US trials of preventive services with adequate inclusion of participants who identify as people of color (specifically, Black, Indigenous, and Latino/Latina people) are limited and may not be feasible or ethical to replicate once evidence in White persons is established. Third, these observations are likely caused by systemic racism, the ways in which public and private policies, institutional practices, and cultural representations foster, reinforce, and perpetuate racial inequality throughout society.6-8
In recognition of the dual crisis of centuries of systemic racism and enduring health inequities affecting people of color in the US,8,9 the USPSTF in 2021 endorsed embedding considerations in every step of its recommendation development process to help rectify the effects of social injustices.10 The USPSTF created a Race and Racism Workgroup and developed a roadmap that outlined 6 actions (Box).10 A report was commissioned to provide information about how racism and health inequities are being addressed in preventive health care and guideline development; details are described in the accompanying article11 and full report.5 This article focuses on updates of USPSTF methods to address systemic racism and promote health equity in preventive services.
Box Section Ref IDBox.
USPSTF Actions to Address Racism in Clinical Preventive Services Recommendationsa
1. Consider race as a social, not a biological construct
2. Promote racial and ethnic diversity in membership and leadership and foster a culture of inclusivity
3. Commission a report to understand how systemic racism undermines the benefits of evidence-based clinical preventive services
4. Iteratively update methods to overcome health inequities experienced by populations affected by systemic racism
5. Communicate gaps created by systemic racism in all dissemination efforts
6. Collaborate with its partners and experts to reduce the influence of systemic racism on health
Abbreviation: USPSTF, US Preventive Services Task Force.
a Source: Doubeni et al,10 2021.
Findings From the Commissioned Report
Purpose of the Commissioned Report
The Scientific Resource Center for the USPSTF was commissioned to conduct evidence syntheses on how racism and health inequities are currently being addressed in preventive health care and guideline development.
Across 27 USPSTF topics audited for the report, most addressed health disparities when describing risk factors, prevalence, morbidity, or mortality, but inconsistent language has been used in the past for describing racial and ethnic groups across recommendation statements and supporting evidence reviews. A potential role of racism as an explanation for health disparities was discussed only once, when commenting on the greater risk and worse outcomes for pregnant Black women in the recommendation statement on prevention of preeclampsia.12 The methods report notes limited or lack of inclusion of racial and ethnic minority groups in studies that provide evidence for recommendations, thus precluding analyses to assess the net benefit of the preventive service for specific racial and ethnic groups. Only 5 recommendation statements and systematic reviews explicitly called for more research in specific racial and ethnic groups that are underrepresented in the supporting evidence.
A large body of literature was found on interventions for improving care in people of color. Most interventions examined cancer or CVD prevention with an array of intermediate outcomes (eg, health care utilization, behavioral outcomes, clinical disease indicators, and screening rates). However, evidence on interventions proven to reduce health disparities was sparse. Interventions designed to improve participation in preventive care were not consistently equally effective across all populations. Evidence was lacking on whether interventions that are effective in people of color (eg, to increase uptake of screening for conditions) also narrow disparities.13 The report found limited research on interventions for reducing systemic racism in health care. Evidence suggests that cultural sensitivity training of health professionals may reduce interpersonal racism, but the effect on patients’ health outcomes was unknown.14-18
The report supported USPSTF commitment to describe race as a social construct with origins in slavery, oppression, exploitation, and discrimination and describes various frameworks related to racism. The World Health Organization framework classifies racism as a source of inequities in social determinants of health.19 Others identify racism as a cross-cutting determinant across other social factors, including access to education, employment opportunities, housing, healthful foods, and transportation, emphasizing the multiple pathways to poor health outcomes. Some frameworks articulate the sources of racism (ie, economic, political, and legal policies and actions at federal, state, and local levels that systematically oppress groups of people based on a notion that they are inferior). One construct, the social causation of disease, posits a vicious cycle of social disadvantage, marginalization, and health disparities.20
The effects of racism on health range from disproportionate health risks and health care delivery gaps to poor health outcomes for people of color. Racism may influence awareness of disease risks, access to health information, trust in research and health care, and exposure to risk factors or disease. Targeted marketing may increase unhealthful behaviors such as smoking, unhealthy alcohol consumption, and reduced physical activity and sleep. Another risk is injury or death from racially motivated violence. Racism may increase adverse cognitive, psychological, and emotional effects. Cumulative chronic stress (ie, allostatic load)21 from racism or social injustices can accelerate decompensation of physiologic mechanisms and organs (eg, chronic activation of the hypothalamic-pituitary-adrenal axis) and lead to adverse biological effects and disease. As the methods report shows, approaches for addressing racism and health inequities require careful consideration of overarching topics and changes to USPSTF methods and recommendations.
Topics for Proposed Changes
The USPSTF recognizes that changes to mitigate the effects of systemic racism10 should begin with a guiding framework to systematically incorporate evidence on racism.
Health Equity Framework for Recommendation Development
Potentially relevant constructs described in the accompanying methods report included the GRADE (Grading of Recommendations Assessment, Development and Evaluation) working group Evidence to Decision Framework, and the World Health Organization's Handbook for Guideline Development.22-26 The USPSTF will consider adaptations of such frameworks to proactively incorporate considerations of health equity into USPSTF preventive services recommendations in terms of
Populations that might be at increased risk, prevalence, or severity for the condition being considered.
Plausible reasons for anticipating differences in the effectiveness of interventions in populations or settings with historical racism in terms of barriers to care or risk of the condition.
Differences in baseline circumstances according to race and ethnicity that affect the effectiveness of interventions or the importance of the condition.
Considerations when implementing recommendations to ensure that inequities are mitigated, not increased or created.
The USPSTF will foster a culture of diversity and inclusivity as an enduring value and redouble efforts to promote racial and ethnic diversity as well as gender, geographic, and disciplinary diversity in membership and leadership. The USPSTF will also engage in member training to address implicit bias.
As Archbishop Desmond Tutu said, “Language is very powerful, language does not just describe reality, language creates the reality it describes.27” As noted in the methods report,5 race and ethnicity are complex terms with different meanings yet are often used interchangeably with little or no definition.28-30 Although there is no consensus on preferred terminology, some consistent themes are discernable.31-35 The reviewed literature indicates that it is preferable to be specific about intended racial and ethnic groups that are the focus of the preventive service or specified research gap. The USPSTF is undertaking work to develop an inclusive language guide as one of its steps to address systemic racism. It will eventually adopt consistent language, terminology, and definitions when referring to racial and ethnic groups that reflect culturally appropriate terminology and will update these terms as new insights are gained from scientific and policy communities, our partners, and the public. The USPSTF will strive to use language consistent with the recent publications and the AMA Manual of Style35,36; for example,
1. Use adjectival forms of racial groups (eg, Black persons, White persons, Black patients, White patients, and similar) and not use noun forms (ie, Whites, Blacks, or Asians).
2. Adhere to parallel structures (eg, Black people and White people) and eliminate the use of nonparallel constructs (eg, African American people and White people).
The USPSTF proposes to always use “person-first” and nonstigmatizing language in recommendation statements, background documents, research plans, evidence and modeling reports, and media communications. Based on the evidence reviewed for the report, the USPSTF will use specific language when referring to groups of people such as Black and Latinx populations rather than referring to them collectively as “diverse” populations.
The effects of systemic racism could be perpetuated through biased risk assessment. To address this source of bias, the USPSTF commits to seek information on the limitations and adjustments made for race or proxies of racism and for bias and unfairness of risk assessment tools. Through pilot tests, the USPSTF plans to explore how clear communication can best be achieved to describe evidence gaps in existing risk assessment tools and in evidence reports. The focus of these communications will be to highlight ways to remediate inequities. This process will enable the USPSTF to assess biases in risk assessment tools, prediction models, or modeling studies.
Aligning Recommendation Development and Dissemination Processes
To promote antiracism and health equity in clinical prevention, the USPSTF will explore how to iteratively transform methods across the recommendation development process (Figure 1).
Topic Selection and Prioritization
New recommendations or updates of existing recommendations are currently assessed and prioritized based on public health importance, effects on clinical practice, new evidence, and the need for balance across topics. In the prioritization process, the USPSTF proposes to add potential effect on health equity as an additional consideration for all topics within scope of its mission. Specific topics that have high potential for advancing health equity or addressing systemic racism will be considered higher priority.
Research Plan, Evidence Review, and Decision Analytic Models
The recommendation development process includes a commissioned evidence review based on a research plan.2 Participants in most randomized clinical trials that are included in these evidence reviews have been predominantly White persons (Figure 2). That is a byproduct of systemic racism and creates a situation in which people of color, who often experience the highest illness burden, have minimal representation in the evidence base. Although the USPSTF strives to reduce health inequities, often there is insufficient evidence to do so. The USPSTF will routinely embed key or contextual questions into the research plans for the evidence synthesis and will also document the presence of health inequities and the representativeness by race and ethnicity in the evidence reports.
The USPSTF understands that many of the mechanisms of systemic racism and health inequities are in areas that are not within the current scope for the USPSTF (eg, implementation, health system drivers, clinical decision-making processes or tools). There is a growing body of evidence that those factors are drivers of inequities in preventive services uptake.37 Future evidence reviews will pilot test inclusion of evidence of differential effectiveness, harms, reach, or delivery of the clinical preventive service, including implementation outcomes (access, acceptability, effect, or applicability) and the role of patient-clinician interaction, and clinical decision-making processes or tools (eg, stereotype/bias and lack of attention to patient preferences).
The USPSTF will explore how to address the lack of direct evidence from randomized trials or an evidence base with limited applicability due to noninclusive studies or studies performed in settings that do not reflect the context of communities of color. Approaches may include the use of the USPSTF grading system (ie, an I statement), and analytic approaches (eg, individual participant meta-analyses and race-aware modeling, when appropriate) to estimate net benefits in people of color. Other methods may include use of robust nonrandomized studies with more representative populations to identify variation in net benefits of clinical preventive services by race and ethnicity. The USPSTF proposes that decision analysis modeling (eg, race-stratified models or separate models that incorporate estimates of benefit and harm from studies with adequate representation of people of color) for the recommendation statement assess, when appropriate, potential effects and unintended consequences of including race or proxies of racism in analyses. These proposed changes will require further testing and refinement to ensure appropriate intended effect on preventive services.
Final Recommendation Statements and Communication of Evidence Gaps
USPSTF recommendations are based on the assessment of certainty of the evidence on the magnitude of net benefits. The USPSTF proposes integrating information about racism and health inequity in future published recommendation statements, including highlighting the inclusiveness of the evidence.
Recommendation statements also will include details of known health inequities by race and ethnicity, known or hypothesized roles of structural racism, and potential differences in the benefits and harms of a recommended preventive service by race, ethnicity, or both. For instance, potential exacerbation of health inequities or perpetuation of racism will be considered harmful and will be stated. The USPSTF also proposes to call for new research consistently when gaps are identified for people of color. Topics with insufficient evidence (I statements) will also be included to identify gaps for consideration of research funding agencies and identify important opportunities to prospectively include populations disproportionately affected by a condition in future research, which may identify gaps for consideration by federal research funding agencies.
Pilot Studies of Proposed USPSTF Approaches to Address Systemic Racism
The USPSTF plans to evaluate the feasibility of implementing the proposed approaches to reduce systemic racism in each methodologic step of recommendation development (Figure 1).
Three to 6 USPSTF recommendation statements that collectively cover screening, behavioral counseling, and medications to prevent disease will be selected for the pilots and will include pediatric, maternal health, and adult topics. Selection of specific recommendation statements will consider topics that have a disproportionate burden in people of color, such as mental health, and prevention of cancer and cardiovascular disease.
Recommendation statements are developed and finalized during 5-year cycles, so these pilot studies will be incorporated during the recommendation development process. The proposed selection criteria will include topics that are in the process of being updated or developed in which the net benefit is substantial or moderate and the evidence reviews had found limited evidence on populations disproportionately affected by the condition.
Partnerships and the Role of the Public
Addressing systemic racism and health inequities go beyond transforming recommendation development processes of the USPSTF. It requires collective actions from all sectors in society, including by clinicians and health systems across the care continuum, other guideline groups, professional and specialty societies, research funding agencies, public health agencies, policy makers, and educators to transform deeply embedded systemic racism in the US. Collaborations may entail sharing of best practices and data to identify, address, and monitor the metrics of success on antiracism and health equity. The USPSTF will engage with partners including the National Medical Association, the National Hispanic Medical Association, Department of Health and Human Services’ Office of Minority Health, National Institutes of Health, Community Preventive Services Task Force, and other agencies to advance the changes proposed.
Effective strategies for dissemination and implementation of preventive services recommended by the USPSTF are critical for realizing full benefits across all populations. Unequal implementation of recommended preventive services is a major driver of health inequities. While differences in implementation may result from myriad factors, overwhelming evidence5 in communities of color points toward systemic racism and historical injustices, including health injustice that contribute to mistrust of science and health care, as a common source. Therefore, the USPSTF has engaged partners, including the Dissemination and Implementation partners, to advance the actions against racism (Box, Action 6).
The USPSTF will engage with its Dissemination and Implementation partners, representing clinicians, consumers, and other groups involved in the delivery of primary care to populations of color, as, collectively, evidence-based roadmaps for care delivery for preventive services are designed to address health inequalities. The USPSTF will highlight findings of racism and health inequities, including gaps in the evidence, that are identified during recommendation development as calls to action in the Annual Report to Congress and communicate these findings to federal research agencies, partner organizations, and disease specialty organizations and patients involved in the continuum of preventive care.
The USPSTF has developed strategies intended to mitigate the influence of systemic racism in its recommendations. The USPSTF seeks to reduce health inequities and other effects of systemic racism through iterative changes in methods of developing evidence-based recommendations, with partner and public input in the activities to implement the advancements.
Corresponding Author: Karina W. Davidson, PhD, MASC, Feinstein Institutes for Medical Research at Northwell Health, 130 E 59th St, Ste 14C, New York, NY 10022 (kdavidson2@northwell.edu).
Accepted for Publication: September 17, 2021.
Published Online: November 8, 2021. doi:10.1001/jama.2021.17594
Author Contributions: Dr Davidson had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Conflict of Interest Disclosures: Dr. Doubeni is section editor for diversity, equity, and inclusion for Gastroenterology. No other disclosures were reported.
The US Preventive Services Task Force (USPSTF) members: Karina W. Davidson, PhD, MASc; Carol M. Mangione, MD, MSPH; Michael J. Barry, MD; Michael D. Cabana, MD, MA, MPH; Aaron B. Caughey, MD, PhD; Esa M. Davis, MD, MPH; Katrina E. Donahue, MD, MPH; Chyke A. Doubeni, MD, MPH; Alex H. Krist, MD, MPH; Martha Kubik, PhD, RN; Li Li, MD, PhD, MPH; Gbenga Ogedegbe, MD, MPH; Lori Pbert, PhD; Michael Silverstein, MD, MPH; Melissa Simon, MD, MPH; James Stevermer, MD, MSPH; Chien-Wen Tseng, MD, MPH, MSEE; John B. Wong, MD.
Affiliations of The US Preventive Services Task Force (USPSTF) members: Feinstein Institutes for Medical Research at Northwell Health, New York, New York (Davidson); University of California, Los Angeles, Los Angeles (Mangione); Harvard Medical School, Boston, Massachusetts (Barry); Albert Einstein College of Medicine, New York, New York (Cabana); Oregon Health & Science University, Portland (Caughey); University of Pittsburgh, Pittsburgh, Pennsylvania (Davis); University of North Carolina at Chapel Hill (Donahue); Mayo Clinic, Rochester, Minnesota (Doubeni); Fairfax Family Practice Residency, Fairfax, Virginia (Krist); Virginia Commonwealth University, Richmond (Krist); George Mason University, Fairfax, Virginia (Kubik); University of Virginia, Charlottesville (Li); NYU Grossman School of Medicine, New York, New York (Ogedegbe); University of Massachusetts Medical School, Worcester (Pbert); Boston University, Boston, Massachusetts (Silverstein); Northwestern University, Chicago, Illinois (Simon); University of Missouri, Columbia (Stevermer); University of Hawaii, Honolulu (Tseng); Pacific Health Research and Education Institute, Honolulu, Hawaii (Tseng); Tufts University School of Medicine, Boston, Massachusetts (Wong).
Funding/Support: The USPSTF is an independent, voluntary body. The US Congress mandates that the Agency for Healthcare Research and Quality (AHRQ) support the operations of the USPSTF.
Role of the Funder/Sponsor: AHRQ staff assisted in the writing and preparation of this report and its submission for publication. AHRQ staff had no role in the approval of the final report or the decision to submit for publication.
Disclaimer: The Agency for Healthcare Research and Quality (AHRQ) at the US Department of Health and Human Services supports the USPSTF. The findings and conclusions in this document are those of the authors, who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ at the US Department of Health and Human Services.
Additional Contributions: We thank Iris Mabry Hernandez, MD, MPH, at the Agency for Healthcare Research and Quality (AHRQ) at the US Department of Health and Human Services, who serves as the medical officer and collaborates with Dr Doubeni to lead the USPTF Race and Racism Workgroup. We also thank Tracy Wolff, MD, MPH, Tina Fan, MD, MPH, Amanda Borsky, MPP, DrPH, Sheena Harris, MD, MPH, Justin Mills, MD, MPH, Brandy Peaker, MD, MPH, and Howard Tracer, MD, and other leaders and staff at AHRQ, the Scientific Resource Center (SRC) for the USPSTF, and the partners of the USPSTF for their contributions to this work. The SRC receives support from AHRQ for its role in this work.
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