Advancing More Equitable Care Through the Development of a Health Equity Report Card

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Alyssa A. Schatz National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Shonta Chambers Patient Advocate Foundation, Hampton, Virginia

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Gretchen C. Wartman National Minority Quality Forum, Washington, DC

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Lisa A. Lacasse American Cancer Society Cancer Action Network, Washington, DC

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Crystal S. Denlinger National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Kristen M. Hobbs National Minority Quality Forum, Washington, DC

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Lindsey Bandini National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Robert W. Carlson National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Robert A. Winn VCU Massey Cancer Center, Richmond, Virginia
VCU School of Medicine, Richmond, Virginia

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The root causes of racial disparities in access to optimal cancer care and related cancer outcomes are complex, multifactorial, and not rooted in biology. Contributing factors to racial disparities in care delivery include implicit and explicit bias, lack of representation of people of color in the oncology care and research workforce, and homogenous research participants that are not representative of the larger community. Systemic and structural barriers include policies leading to lack of insurance and underinsurance, costs of cancer treatment and associated ancillary costs of care, disparate access to clinical trials, and social determinants of health, including exposure to environmental hazards, access to housing, childcare, and economic injustices. To address these issues, ACS CAN, NCCN, and NMQF convened the Elevating Cancer Equity (ECE) initiative. The ECE Working Group developed the Health Equity Report Card (HERC). In this manuscript, we describe the process taken by the ECE Working Group to develop the HERC recommendations, the strategies employed by NCCN to develop an implementation plan and scoring methodology for the HERC, and next steps to pilot the HERC tool in practice settings.

Abstract

The root causes of racial disparities in access to optimal cancer care and related cancer outcomes are complex, multifactorial, and not rooted in biology. Contributing factors to racial disparities in care delivery include implicit and explicit bias, lack of representation of people of color in the oncology care and research workforce, and homogenous research participants that are not representative of the larger community. Systemic and structural barriers include policies leading to lack of insurance and underinsurance, costs of cancer treatment and associated ancillary costs of care, disparate access to clinical trials, and social determinants of health, including exposure to environmental hazards, access to housing, childcare, and economic injustices. To address these issues, ACS CAN, NCCN, and NMQF convened the Elevating Cancer Equity (ECE) initiative. The ECE Working Group developed the Health Equity Report Card (HERC). In this manuscript, we describe the process taken by the ECE Working Group to develop the HERC recommendations, the strategies employed by NCCN to develop an implementation plan and scoring methodology for the HERC, and next steps to pilot the HERC tool in practice settings.

Cancer prevention and treatment systems are significantly impacted by interpersonal, organizational, and structural and systemic racism. A wide body of research has found that racial disparities in both cancer care outcomes and access to guideline-concordant care are pervasive throughout the United States.1,2 Inequities in cancer outcomes across race and ethnicity have numerous contributing factors, including disparate access to comprehensive insurance coverage, bias and discrimination in care delivery, and social determinants of health (SDOH), such as one’s neighborhood and built environment, access to economic and educational opportunity, food insecurity, and social support networks.36 These challenges require a coordinated, robust, deliberate, and enduring response to reform cancer care systems and address racial disparities in cancer care. This article highlights efforts of the Elevating Cancer Equity (ECE) Working Group, convened by the American Cancer Society Cancer Action Network (ACS CAN), the National Comprehensive Cancer Network (NCCN), and the National Minority Quality Forum (NMQF), to develop an actionable framework for organizational and clinical practice change to create more equitable systems of cancer care delivery, titled the “Health Equity Report Card” (HERC).

The Elevating Cancer Equity Initiative

The root causes of racial disparities in access to optimal cancer care and related cancer outcomes are complex, multifactorial, and not rooted in biology. Contributing factors to racial disparities in care delivery include implicit and explicit bias, lack of representation of people of color in the oncology care and research workforce, and homogenous research participants that are not representative of the larger community.7 Systemic and structural barriers include policies leading to lack of insurance and underinsurance, costs of cancer treatment and associated ancillary costs of care, disparate access to clinical trials, and SDOH, including exposure to environmental hazards, access to housing, childcare, and economic injustices.7 Studies have evaluated oncologists’ rates of implicit bias and found that oncologists scoring higher on implicit bias tests had shorter interactions with Black patients and were viewed as less patient-centered and supportive by Black patients.5,8 Additionally, some studies have evaluated the role of bias and stereotyping in referral to clinical trials and have concluded that racial bias and assumptions do play a role in low rates of clinical trial referral.9

To address these issues, ACS CAN, NCCN, and NMQF convened the Elevating Cancer Equity (ECE) initiative. This initiative aims to go beyond the exploration of causes to identify and promote actionable solutions through the combined experience and expertise of racial and ethnic minority patients and caregivers and national experts. A survey of patients, caregivers, and oncologists was conducted, after which a multistakeholder expert ECE Working Group (eAppendix 1, available with this article at JNCCN.org) met and developed the HERC (supplemental eFigure 1).10 This article describes the process taken by the ECE Working Group to develop the HERC recommendations, the strategies employed by NCCN to develop an implementation plan and scoring methodology for the HERC, and next steps to pilot the HERC tool in practice settings.

Development of the HERC

The ECE Working Group was convened to discuss the root causes of racial disparities in access to optimal cancer care and to develop actionable policy and practice change solutions that, if implemented, would disrupt discriminatory behaviors and bias in care delivery, address SDOH, and address systemic barriers to optimal care. The ECE Working Group was chaired by Dr. Robert Winn, Director of the Virginia Commonwealth University Massey Cancer Center, and Ms. Shonta Chambers, Executive Vice President of Health Equity and Community Engagement at the Patient Advocate Foundation. The ECE Working Group comprised 17 members nominated by key project staff at each of the 3 convening organizations. Potential members were nominated based on their professional accomplishments in relation to equity in cancer care and/or their personal experiences with cancer care disparities as patients/caregivers. The 3 convening organizations then narrowed and refined the final group to ensure a diversity of expertise across various professional and personal domains. Ultimately, the final group of 17 members represented physicians and other healthcare professionals, patients, caregivers, researchers, and professionals in the pharmaceutical/biotech industry from racially and ethnically diverse communities and geographic locations. In advance of the meeting, working group members were provided with a discussion guide containing relevant literature as well as the results of 2 surveys—one of patients and caregivers and one of oncologists—that explored experiences with and perceptions of disparities in cancer care, conducted by Public Opinion Strategies.10

The ECE Working Group met over the course of 2 days in January 2021. The meeting began with an overview of key highlights from the ECE patient, caregiver, and oncologist surveys and a presentation on disparities in receipt of guideline-concordant care. Following these presentations, the working group members were assigned to small discussion groups across 4 key focus areas: (1) research and clinical trials, (2) risk reduction, prevention, and early detection, (3) care delivery, and (4) SDOH. The small groups were charged with discussing root causes of racial disparities within their assigned area, challenges to addressing these causes, and policy and practice changes that would address these issues. Small groups then presented recommended policy and practice solutions within each area, which were refined and finalized by the larger working group throughout the course of the meeting and subsequent follow-up meetings.

Actionable clinical practice change solutions were defined as interventions targeted to physician practices and hospitals that would reduce racial disparities in cancer care. However, as working group members discussed the desired practice changes, a key concern arose regarding the ability of the ECE Working Group to ensure both accountability for the implementation of these changes and the ability to implement and measure these changes. To address this concern, rather than disseminating traditional practice change recommendations, the working group developed the HERC (supplemental eFigure 1), an accountability, quality improvement, and transparency tool for accreditation entities, payers, and providers seeking to advance more equitable policies and practices within their care systems. A 6-phase process to develop and implement the HERC has been undertaken. This article describes phases 1 through 4 of the process.

Phase 1: Identification of Practice Barriers and Root Causes of Racial Disparities in Cancer Care

The ECE Working Group discussed the root causes and systemic barriers creating racial disparities in cancer care and worked to identify high-impact areas of intervention. Several key themes emerged throughout these discussions (Table 1). The Research and Clinical Trials subgroup reported a primary barrier to adequate racial representation in clinical trials being low rates of providers discussing clinical trials with patients. Participants discussed a common belief among medical professionals that Black/African American and Hispanic/Latinx patients are less willing to participate in clinical trials. However, the working group asserted that this belief may be a self-fulfilling prophecy. Within the ECE survey, 72% of physicians reported discussing clinical trials with their patients “nearly always” or “often” but just 39% of patients reported being informed of available clinical trials.10 The ECE Working Group also noted that the health system’s historic and ongoing inequitable practices have understandably led to patient mistrust. Patients may assume participation in a trial is a lower quality of care, and therefore the health system must do a better job of communicating that clinical trials are an integral part of the continuum of care.

Table 1.

Identified Practice-Level Barriers

Table 1.

The group also discussed barriers to equitable cancer prevention and early detection. ECE Working Group members noted the importance of linguistically appropriate marketing and educational materials around screening and also emphasized the importance of culturally appropriate messaging. An example highlighted is the propensity for investing in and caring for future generations within the Asian community. Therefore, framing screening in terms of its impact for future generations may be more impactful than individual-level messaging. The group also emphasized the importance of patient navigators and community health workers being representative of the communities in which they serve, both to engage people in screening and to get individuals from screening into treatment when needed.

Addressing bias in care delivery is critical to advancing equitable outcomes in cancer care. Group members noted a significant barrier is the dearth of effective anti-racism and anti-bias training and practices in oncology. ECE Working Group members noted that a significant portion of oncology patients are seen at community practices. Therefore, a rapid change of best practices in community settings is key to ensuring equity in care delivery. Finally, the field of medicine, and oncology in particular, has substantial underrepresentation of Hispanic/Latinx and Black/African American professionals, with only 2% of oncologists identifying as Black and <6% of oncologists identifying as Hispanic/Latinx.11 Studies have demonstrated that poorer communication and lower patient satisfaction are more likely to occur when a patient and physician are of different racial backgrounds.12 A lack of appropriate racial representation among oncologists perpetuates bias in care delivery.

Finally, the group discussed SDOH impacting disparate cancer care outcomes. A key challenge identified was the lack of data collection on SDOH, or more specifically, the social and economic needs gaps caused by them. There are now established medical billing codes specifically intended for the collection of SDOH data, but adoption of these billing codes has been slow.13 The SDOH subgroup discussed the importance of collecting these data and further using it as a way to understand community needs and engaging with community-based organizations. The group emphasized that these data should be used to facilitate work to identify and address community priorities in partnership with community representatives. The need for patient navigators who are both linguistically and culturally reflective of their surrounding communities was a common theme that emerged across all breakout groups. Unfortunately, to date navigation services have not been implemented on a broad scale, although the benefits have been well documented, because they are largely funded by grant programs and are typically not reimbursable by payers.

Phase 2: Developing the HERC

The ECE Working Group employed a similar process to identify root causes and practice barriers to develop recommendations for practice changes. The 4 assigned small groups (research and clinical trials, risk reduction, prevention, and early detection, care delivery, and SDOH) met to share best practices and potential solutions to the identified practice challenges, and then reconvened as a larger group to present their recommendations for inclusion. Using a consensus-based process, the ECE Working Group then refined and modified the list following larger group feedback across each area. The group narrowed the recommendations further and identified the 4 final domains for the report card. The 4 HERC domains ultimately identified by expert-driven consensus were: (1) CommunityEngagement, (2) Accessibility of Care and SDOH, (3) Addressing Bias in Care Delivery, and (4) Quality and Comprehensiveness of Care. The remaining recommendations across the categories were then further narrowed, prioritized according to the recommendations’ perceived potential for impact on reducing disparities and addressing existing gaps in care delivery by the multistakeholder group of experts. This process resulted in 17 actionable recommendations across the 4 domains being included in the HERC.

The ECE Working Group intentionally selected a report card format to convey the intention of the HERC as a quality improvement and accountability tool. ECE Working Group members also recognized its potential utility in serving as an important transparency tool for patients. For example, similar to the Centers for Medicare & Medicaid Services (CMS) Quality Star Ratings, this report card could be made publicly available within payer networks so that patients can select providers who have been rated highly on the metrics that matter most to them across the 4 domains.

Phase 3: Designing the HERC Implementation Plan

A tool outlining performance metrics and applicable sources of evidence for each HERC recommendation was developed by NCCN to allow for the implementation of the HERC in practice settings based upon objective evidence rather than attestation alone. NCCN then convened a group of administrative and clinical representatives from leading academic cancer centers to provide feedback on the feasibility of the draft implementation plan, including appropriateness of metrics and sources of evidence. Although these representatives were invited to provide feedback on feasibility and appropriate sources of evidence for use within the plan, participants were instructed that the recommendations themselves were not able to be revised from the working group intentions. Working group participants provided feedback on clarity of metrics, appropriateness of sources of evidence, and potential barriers to implementation, resulting in refinement of the implementation plan. The final plan was presented to a larger group of academic cancer center representatives for finalization. The final implementation plan for the pilot is shown in Table 2.

Table 2.

Health Equity Report Card Implementation Tool

Table 2.

Phase 4: Developing a Scoring Methodology

A scoring methodology was developed by NCCN to support the implementation of the HERC in practice settings. The full scoring methodology is outlined in supplemental eFigure 2. The ECE Working Group intended the report card to be scored individually across each domain rather than providing an overall score to ensure greater transparency and utility of information for patients making healthcare purchasing decisions. Individually scored domains also offer value to healthcare institutions, payers, accreditation entities, and other third parties interested in focusing on specific areas for improvement. Each of the 4 domains in the HERC is individually scored with a grade (Pass with Distinction, Pass, Needs Improvement) and a percentage of met/unmet metrics is provided in parentheses [eFigure 2]. The domains for individual grading include (1) Community Engagement, (2) Accessibility of Care and SDOH, (3) Addressing Bias in Care Delivery, and (4) Quality and Comprehensiveness of Care.

Each metric within a domain is weighted equally using met or not met. If only half of a requirement is met, the participant receives half the credit for that section. There are some metrics through which participating sites may be exempted in certain circumstances. If a clinical practice or institution is exempt from metrics within a category, the grading weights will be adjusted accordingly. Scoring methodology for each section is as follows: Pass with Distinction: 100% of metrics met; Pass: 50%–99% of metrics met; Needs Improvement: 0%–49% of metrics met.

Discussion

NCCN, ACS CAN, and NMQF recognized the need for actionable clinical practice level solutions to address disparities in cancer care access, quality, and outcomes across race and ethnicity. Through the convening of the ECE Working Group, an expert consensus-based process was employed to develop a tool for better measurement and advancement of equitable practices within cancer care. The resulting HERC included 17 recommendations across 4 domains. These clinical practice recommendations were then translated into an implementation plan including concrete metrics, sources of evidence, and a scoring methodology, all of which were vetted by oncology administrators and healthcare providers for feasibility.

The HERC methodology requires pilot testing within actual clinical practice settings for feasibility and scalability. Phases 5 and 6 of this project include pilots at academic and community-based clinical practices, respectively. Throughout 2022 and 2023 NCCN is piloting the feasibility of implementing this tool within academic settings with 5 leading academic cancer centers. NCCN also anticipates piloting the HERC in community-based settings in 2023. Pending findings of these pilot projects, NCCN anticipates refining the HERC as necessary for feasibility prior to broader dissemination across health systems.

There are several limitations associated with the HERC development process. The HERC is not yet validated for feasibility or impact on care outcomes. The feasibility of using the HERC in both academic and community practice settings is being studied in pilot projects to ensure it is broadly feasible to use across a variety of clinical practice settings. It is anticipated that implementation challenges may arise, particularly in lower-resource care settings. To address this, the pilot site selection process will intentionally include a diversity of resourced settings. It is also recognized that populations and the demographic makeup of a given area may impact the ability of practices to meet certain metrics, including recruiting and promoting a representative workforce and offering linguistically or culturally appropriate educational materials. As such, the metrics within the implementation plan are framed within the context of the surrounding community to ensure the benchmarks to be met are reflective of the practice setting and needs of the local community. Given the highly individualized needs and resources across communities, it will be particularly important for practices using the HERC to focus on bidirectional community partnerships as they embark on HERC scoring. Working side by side with existing community organizations and resources will allow each participating organization to maximize available resources, tailor their practice to community needs, and ultimately build more responsive programming. Finally, we acknowledge that governmental, legal, and regulatory forces also impact the ability to meet these metrics, including the ability of health systems to recruit a diverse and representative workforce. As such, it is critically important that practice change be pursued alongside advocacy for systems change.

Further testing regarding downstream impact on practice and institutional change, care outcomes, and patient experience is also important following completion of pilot testing and refinement for feasibility. The HERC was developed based on the expertise of a relatively small number of recognized experts in cancer care disparities. It will be important to continue to learn from the pilot projects, from additional stakeholder groups, and from the evolving literature on practices to reduce inequities in healthcare. These limitations warrant further research and evaluation during and following the pilot studies.

Several additional promising and unique quality improvement tools are emerging in health equity. The Institute for Healthcare Improvement is piloting their health equity assessment tool as part of the Pursuing Equity Initiative, focusing on an organization’s commitment to equity, serving the broader community, and increasing appropriate racial representation in health systems.14 ASCO also released a framework to advance more equitable cancer care systems through the work of an expert roundtable intended to be used by healthcare practitioners and policymakers voluntarily to improve their practice.7 The National Committee for Quality Assurance (NCQA) has also released commercially licensed Health Equity Accreditation Programs. Similar to the HERC, each of these efforts is also in early stages, and the impact of their use on improving equitable care has not been established. Although the ECE HERC tool has areas of overlap with all of these models, it is distinct in that it uses a more structured scoring approach and offers clinical practice level measures in addition to broader organizational measures.15 Additionally, the HERC is intended to be translatable and adaptable across a variety of use settings, including by public and private payers, accreditation entities, healthcare organizations, and patients. The HERC is intended to offer a mechanism to measure and incentivize more equitable care practices while also offering greater transparency for patients to inform their decision-making.

Summary

The ultimate goal of this initiative is to develop a tool that can both meaningfully and feasibly measure and report on equitable care practices. The HERC as outlined within this paper offers an important first step, but we recognize that attaining this ultimate goal will require further study to ensure the tool is more than a “checklist” exercise and is an intervention that can result in meaningful, sustainable systems change. As such, there are additional efforts underway to pilot the report card for feasibility. As we learn more about the ability to incorporate this tool into practice as well as its impact on care outcomes and inequities in care, the tool may be adjusted and evolve for optimal impact.

The development of the HERC is timely, given that governments, payers, and providers are seeking actionable mechanisms to improve equity in our healthcare system. The CMS recently announced they will be considering the implementation of an equity score for hospitals within the proposed FY 2022 Hospital Inpatient Prospective Payment System rule. Additionally, the Enhancing Oncology Model recently introduced by Center for Medicare & Medicaid Innovation is anticipated to require participating practices to include a health equity plan. As the US health system shifts to require greater provider accountability for racial disparities in health outcomes, models like the ECE HERC can serve as a roadmap for providers and healthcare organizations working to improve their practice, a transparency tool for patients, and an assessment tool for payers and accreditation entities.

References

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    Schatz AA, Brooks-Coley K, Harrington E, et al. Patient, caregiver, and oncologist experiences with and perceptions of racial bias and discrimination in cancer care delivery. J Natl Compr Canc Netw 2022;20:10921098.e2.

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    ASCO. Diversity in Oncology Initiative. Accessed July 29, 2022. Available at: https://old-prod.asco.org/news-initiatives/current-initiatives/cancer-care-initiatives/diversity-oncology-initiative

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    Shen MJ, Peterson EB, Costas-Muñiz R, et al. The effects of race and racial concordance on patient-physician communication: a systematic review of the literature. J Racial Ethn Health Disparities 2018;5:117140.

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    Centers for Medicare & Medicaid Services. Using Z codes. Accessed July 29, 2022. Available at: https://www.cms.gov/files/document/zcodes-infographic.pdf

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Submitted November 3, 2022; final revision received January 5, 2023; accepted for publication January 6, 2023.

Disclosures: The authors have disclosed that they have no financial interests, arrangements, or affiliations with the manufacturers of any products discussed in this article or their competitors. A. Schatz, C.D. Denlinger, L. Bandini, and R.W. Carlson are employed by NCCN.

Funding: The ECE Working Group was funded by 2seventy bio (formally known as Bluebird); AbbVie; Bristol Myers Squibb; Genentech; GlaxoSmithKline; Janssen; Lilly; Merck & Co., Inc.; MorphoSys; Pfizer Oncology; Regeneron; Sanofi; and Taiho Oncology.

Correspondence: Alyssa A. Schatz, MSW, National Comprehensive Cancer Network, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462. Email: schatz@nccn.org

Supplementary Materials

  • Collapse
  • Expand
  • 1.

    Zavala VA, Bracci PM, Carethers JM, et al. Cancer health disparities in racial/ethnic minorities in the United States. Br J Cancer 2021;124:315332.

  • 2.

    Tong M, Hill L, Artiga S. Racial disparities in cancer outcomes, screening, and treatment. Accessed July 29, 2022. Available at: https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-disparities-in-cancer-outcomes-screening-and-treatment/

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3.

    Pinheiro LC, Reshetnyak E, Akinyemiju T, et al. Social determinants of health and cancer mortality in the Reasons for Geographic and Racial Differences in Stroke (REGARDS) cohort study. Cancer 2022;128:122130.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Ko NY, Hong S, Winn RA, Calip GS. Association of insurance status and racial disparities with the detection of early-stage breast cancer. JAMA Oncol 2020;6:385392.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Penner LA, Dovidio JF, Gonzalez R, et al. The effects of oncologist implicit racial bias in racially discordant oncology interactions. J Clin Oncol 2016;34:28742880.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 6.

    Coughlin SS. Social determinants of health and cancer survivorship. J Environ Health Sci 2021;7:1115.

  • 7.

    Winkfield KM, Regnante JM, Miller-Sonet E, et al. Development of an actionable framework to address cancer care disparities in medically underserved populations in the united states: expert roundtable recommendations. JCO Oncol Pract 2021;17:e278293.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8.

    Smedley BD, Sith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. National Academies Press: 2002.

  • 9.

    Niranjan SJ, Martin MY, Fouad MN, et al. Bias and stereotyping among research and clinical professionals: Perspectives on minority recruitment for oncology clinical trials. Cancer 2020;126:19581968.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Schatz AA, Brooks-Coley K, Harrington E, et al. Patient, caregiver, and oncologist experiences with and perceptions of racial bias and discrimination in cancer care delivery. J Natl Compr Canc Netw 2022;20:10921098.e2.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 11.

    ASCO. Diversity in Oncology Initiative. Accessed July 29, 2022. Available at: https://old-prod.asco.org/news-initiatives/current-initiatives/cancer-care-initiatives/diversity-oncology-initiative

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 12.

    Shen MJ, Peterson EB, Costas-Muñiz R, et al. The effects of race and racial concordance on patient-physician communication: a systematic review of the literature. J Racial Ethn Health Disparities 2018;5:117140.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    Centers for Medicare & Medicaid Services. Using Z codes. Accessed July 29, 2022. Available at: https://www.cms.gov/files/document/zcodes-infographic.pdf

  • 14.

    Institute for Healthcare Improvement. Tool: how to know where to go on health equity. Accessed September 6, 2022. Available at: https://www.ihi.org/communities/blogs/how-to-know-where-to-go-on-health-equity

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 15.

    NCQA. NCQA’s Health Equity Accreditation Programs. Accessed September 6, 2022. Available at: https://www.ncqa.org/programs/health-equity-accreditation/

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