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Promoting Health Equity in Cancer Care: Proceedings of a Workshop (2022)

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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Proceedings of a Workshop

WORKSHOP OVERVIEW1

Despite advances in the delivery of high-quality cancer care and improvements in patient outcomes in recent years, disparities in cancer incidence, care, and patient outcomes persist (IOM, 2013; Mokdad et al., 2017; Siegel et al., 2021). Zinzi Bailey, a social epidemiologist and assistant professor at the Miller School of Medicine at the University of Miami, said numerous factors contribute to disparities in cancer risk and patient outcomes, including genetic and biological factors, access to health care, socioeconomic factors, chemical and physical exposures, diet, and physical inactivity. Underlying many of these risk factors are the social determinants of health (SDOH), such as an individual’s living conditions (e.g., physical, social, and work environments and access to services) (see Box 1 for examples of terminology definitions shared by workshop speakers). Root causes driving these SDOH are institutional inequi

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1 This workshop was organized by an independent planning committee whose role was limited to identification of topics and speakers. This Proceedings of a Workshop was prepared by the rapporteurs as a factual summary of the presentations and discussions that took place at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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ties that are perpetuated by laws and regulations, as well as social inequities, including racism, classism, sexism, heterosexism, and imperialism.2

Chanita Hughes-Halbert, professor and vice chair of research and associate director for cancer equity at the University of Southern California Norris Comprehensive Cancer Center, said the COVID-19 pandemic further exposed the inequities and injustices in the U.S. health care system, which she said led to the “acknowledgment of structural racism as the most fundamental cause of inequality and injustice” in health outcomes (Egede and Walker, 2020; Gravlee, 2020; Khazanchi et al., 2020; Zalla et al., 2021). Across the continuum of cancer care, Hughes-Halbert said structural racism can result in inadequate communication, lack of referral for potential symptoms of cancer, misdiagnoses, and unequal access to high-quality treatment.

To examine opportunities to improve health equity across the cancer care continuum, the National Cancer Policy Forum and the Roundtable on the Promotion of Health Equity hosted a public workshop, Promoting Health Equity in Cancer Care, on October 25 and October 26, 2021. This virtual workshop featured presentations and panel discussions on topics that included opportunities to improve equitable access to affordable, high-quality cancer care; strategies to identify and address the intersectionality of structural racism and implicit bias in cancer care delivery; the potential for quality measurement and payment mechanisms to incentivize health equity in cancer care delivery; and clinical practice data collection efforts to better assess and care for people living with and beyond cancer.

Gwen Darien, executive vice president for patient advocacy and engagement at the National Patient Advocate Foundation, said the workshop was designed for “thought-provoking, . . . and perhaps uncomfortable conversations” about structural racism, SDOH, intersectionality, and the structural changes needed to ensure an equitable cancer care delivery system. She encouraged participants to consider “actionable, direct, and bold steps” centered on health equity to reduce the burden of cancer for all.

The workshop builds on a recent webinar series hosted by National Cancer Policy Forum on key social needs that can affect cancer care delivery and patient outcomes, including food insecurity, housing insecurity, and transportation insecurity,3 said Hughes-Halbert. She added that the Healthy

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2 See https://www.thenationshealth.org/content/nations-health-series-social-determinants-health (accessed February 11, 2022).

3 See https://www.nationalacademies.org/event/05-10-2021/food-insecurity-among-patients-with-cancer-a-webinar; https://www.nationalacademies.org/event/0809-2021/housing-insecurity-among-patients-with-cancer-a-webinar; and https://www.nationalacademies.org/event/09-21-2021/transportation-needs-among-patients-with-cancer-a-virtual-webinar (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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People 2030 goal—to “create social, physical, and economic environments that promote attaining the full potential of health and well-being for all”—is reflected throughout the workshop.4

This Proceedings of a Workshop summarizes workshop presentations and discussions. Observations and suggestions from individual participants are discussed throughout the proceedings, and highlights are presented in Boxes 2 and 3 (Box 2 highlights individual speaker observations about health inequities in cancer care and Box 3 highlights opportunities for participants in the cancer care ecosystem to promote health equity in cancer care, as suggested by individual workshop participants). Appendix A includes the Statement of Task for the workshop. The workshop agenda is provided in Appendix B. Speaker presentations and the workshop webcast have been archived online.5

SOCIAL DETERMINANTS OF HEALTH AND STRUCTURAL RACISM IN CANCER CARE

Promoting equity and justice in cancer care has become a national priority, Hughes-Halbert said. Bailey added that working to address inequities stemming from SDOH without addressing their root causes will not eliminate racial and ethnic disparities in cancer care. “The elimination of health inequities depends on the degree to which we invest in dismantling structural racism,” Bailey said. She emphasized that racism is not an isolated act or event, or collection of acts, and it is not the result of private prejudices; it is the comprehensive system and process of discrimination, produced and perpetuated by laws, rules, and practices embedded in societal culture and economic systems. “Structural racism involves mutually reinforcing inequitable systems, operating in different sectors or domains, at different levels, which serve to reinforce discriminatory beliefs and thereby normalize and legitimize historical, cultural, institutional, and chronic adverse outcomes for people of color,” she said.

Economic injustice and social deprivation, environmental and occupational exposures, psychosocial trauma, targeted marketing of health-harming substances, inadequate health care, state-sanctioned violence, and political exclusion are some of the pathways through which structural racism leads to health inequities, Bailey explained (Bailey et al., 2017). As an example, she described the process of racial and ethnic residential segregation known as redlining, begun in the 1930s, in which loans for housing were approved or denied based on the racial and ethnic composition of the neighborhood.

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4 See https://health.gov/healthypeople/objectives-and-data/social-determinants-health (accessed February 11, 2022).

5 See https://www.nationalacademies.org/event/10-25-2021/promoting-health-equity-in-cancer-care-a-virtual-workshop (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Image
FIGURE 1 Mutually reinforcing pathways from structural racism to inequities.
SOURCES: Bailey presentation, October 25, 2021. Graphic designed by Anusha Vable based on Bailey et al., 2017.

This resulted in segregation not only of people, but of resources, systems, and institutions, Bailey said, whereby racially diverse communities faced the growing problems of environmental hazards, inadequate health care and education, state-sanctioned violence, and municipal disinvestment.

Bailey noted that the pathways from structural racism to health inequities are mutually reinforcing (see Figure 1). For example, a felony conviction affects an individual’s employment opportunities, and in the United States, employment status is associated with health care coverage and can affect access to high-quality care. Employment earnings affect an individual’s ability to pay bills, which in turn affects creditworthiness and whether one can afford to rent or buy a home. Bailey added that public schools are funded by property taxes, which means that where someone can afford to live affects the quality of education their children receive. A felony conviction can also prohibit one from accessing social safety net services and from voting. In this one example, the criminal legal system can have intergenerational impacts on a family, she said.

Elements of an Equitable Cancer Care Delivery System

Darien and Reginald Tucker-Seeley, vice president of Health Equity at Zero—The End of Prostate Cancer, asked workshop speakers to describe

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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elements of an equitable cancer care delivery system. “Equitable cancer care starts with equitable prevention,” Hughes-Halbert said, and highlighted the need for research and interventions that address upstream SDOH factors at a community level, rather than focusing on individual social needs.6 Equitable prevention requires equity in the environments where people “live, work, play, and receive health care,” she said, such as stable housing, high-quality education, and access to healthy foods. She noted that the Medical University of South Carolina Transdisciplinary Collaborative Center in Precision Medicine and Minority Men’s Health is examining opportunities to better integrate, interpret, and apply biological, social, psychological, and clinical determinants of disease risks and outcomes into more precise medical strategies to prevent, diagnose, and treat chronic health conditions and diseases.7

Patrick McCarter, a member of the Greensboro Health Disparities Collaborative (GHDC), said the increased rates of cancer in many communities can be linked to environmental hazards, and noted that local, state, and federal government actions affect the quality of a community’s environment. Terence “TC” Muhammad, a member of the GHDC, agreed and said there are substantial health implications of living near landfills and power plants, attending underfunded school systems, and living in jurisdictions subject to overpolicing. “There is not going to be [health] equity if the rest of the environment around me is not equitable for healthy living,” he said.

Hughes-Halbert said that in an equitable health system, people can obtain high-quality cancer care regardless of where they are diagnosed or treated. Bailey and McCarter added that an equitable cancer care system engenders a sense of trust, built on empathy between caregivers and patients. Bailey noted that cancer care is an ongoing process—not a one-time event—and patients benefit from sustaining a continuous relationship with their cancer care team. However, she noted that people in marginalized communities are often cared for by different clinicians across their cancer care trajectory.

Bailey and McCarter said the asymmetry in knowledge between clinicians and patients can make communication about the patient’s cancer diagnosis and treatment challenging and may contribute to health disparities. Patients may avoid care because they feel intimidated by their clinicians and the health care system, they are anxious about health care costs, they feel unable to navigate the care process, or they do not feel comfortable engaging with the clinicians, all of which can perpetuate disparities in cancer outcomes. An equitable cancer care system also ensures that access to care is timely, McCarter said,

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6 See https://www.healthaffairs.org/do/10.1377/hblog20190115.234942/full (accessed February 11, 2022).

7 See https://hollingscancercenter.musc.edu/research/transdisciplinary-collaborative-center-precision-medicine-minority-mens-health (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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because a delayed diagnosis can result in a worse prognosis for patients. He said that marginalized populations often struggle with accessing care quickly due to the complexity of the health care system and a lack of assistance in navigating the process.

The collection of data on health care quality is a critical element of an equitable cancer care system, McCarter said. However, there is often inadequate data collection on disparities in cancer care and patient outcomes. Data are needed, for example, on the extent to which patients are completing their course of therapy and whether state-of-the-art diagnostic and treatment approaches are accessible to them, such as biomarker testing for molecularly targeted cancer therapies or the use of immunotherapy strategies, including chimeric antigen receptor T-cell (CAR-T) therapy.

Incorporating Key Voices in Cancer Care

Tucker-Seeley said the inclusion of patients and community members as well as health care professionals, health care systems, and others is critical to defining and realizing an equitable cancer care delivery system.

Muhammad and McCarter discussed the GHDC as an example of a community-focused intervention to identify and address health disparities and promote equity (see Box 4). Muhammad emphasized the importance of listening to the community when working to promote institutional change from both within and outside the health care system. The GHDC works to ensure that all participants—including community partners and academic clinicians and researchers—have an equal footing in discussions to create change. Muhammad underscored the need for persistence in holding conversations involving community leaders and the health care establishment. He added that it is critical to engage the next generation of health professionals and researchers to help them understand racism at the start of their careers, before they are embedded in current institutional systems.

Hughes-Halbert called for multisector partnerships to effectively address structural racism in health care. For example, she said that partners with expertise in urban planning could help address transportation issues, and partners with legal expertise could help address issues of housing instability. Hughes-Halbert said the community outreach and engagement requirement8 for National Cancer Institute (NCI)-Designated Cancer Centers has created momentum for this multisector approach.

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8 See https://cancercontrol.cancer.gov/research-emphasis/supplement/coe (accessed May 22, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

Countering Resistance to Change

Tucker-Seeley asked panelists to consider how to address the current pushback in the United States against dismantling racism and reducing health disparities. Bailey said it is essential to continue to have conversations about these issues, but these conversations need to be rooted in a common understanding and truthfulness. “Unlike other countries, we have not had a full truth and reconciliation process” about the history of this nation, Bailey said, emphasizing that the nation needs to come to terms with its history of slavery, redlining, immigration policy, and other discriminatory practices before sustainable change can happen. Hughes-Halbert stressed the importance of initiating and maintaining these difficult conversations. She said bringing more inclusivity and diversity of expertise to these conversations would open the door to discussions about components of critical race theory and how they apply to equity in cancer care. McCarter raised concern that the current pushback against critical race theory could derail progress by rehashing discussions about well-established and understood disparities. He said institutions should be required to collect and report health outcomes data by race, sex, gender identity, geography, and other factors, and to explain the heath disparities in their care systems. “These disparities have an impact not just on people of color, but on our health care system as a whole,” McCarter said.

APPROACHES TO OPERATIONALIZING EQUITY

A key topic of discussion among many speakers was the importance of institutions moving beyond making statements supporting equity to operationalizing equity within their institutions. Several speakers described the efforts that leading institutions and organizations are taking to change the structures that perpetuate inequities in cancer risk, care, and outcomes. To launch the discussion, Tucker-Seeley highlighted eight opportunities to operationalize health equity in organizations involved in cancer research, policy, and care:

  1. Establishing clear organizational definitions of health disparities and health equity. “A commitment to health equity must be fully integrated within the organization,” Tucker-Seeley said, across all activities and workflows, from the leadership level to the implementation level. He noted that how these concepts are defined by an organization signals how the organization views the acceptability of the historical and social hierarchies that created and sustain disparities and inequities.
  2. Explicitly identifying the disparities to be addressed, actions to be taken, and metrics of success. Tucker-Seeley said this involves defining
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×
  1. how the organization will act on its commitment to promoting health equity across the continuum of care through the allocation of fiscal and human resources to address specific disparities.
  2. Systematically collecting standardized sociodemographic data during cancer care and cancer research. The sociodemographic data needed to identify and track disparities in cancer care and outcomes are often lacking, especially for populations that have been historically underrepresented in research, said Tucker-Seeley. To engage these historically underrepresented groups, he said the clinical research and care enterprises need to first demonstrate that they are trustworthy.
  3. Engaging the community as valued partners. Tucker-Seeley cautioned against “token engagement” with community partners. He cited the GHDC as an example of bringing community, institutional, and academic collaborators to the table as equal partners.
  4. Establishing multisectoral collaborations to address SDOH and end structural racism. Tucker-Seeley referred participants to the work on intersectionality by Bowleg (2021) that applies critical frameworks to research and practice to reduce the emphasis on the choices an individual has made, and prioritizes “the factors and processes that create the choice sets that people have.”
  5. Structuring cancer care to better facilitate access to high-quality care for all patients. Cancer care should be patient-centered and structured to remove barriers to receiving high-quality care, Tucker-Seeley said. Similarly, people who volunteer to participate in clinical research should be valued as equals to other members of the research team (e.g., academic collaborators, funders, journal publishers).
  6. Developing and testing interventions that will reduce or eliminate health disparities. Tucker-Seeley called on organizations to move beyond identifying and describing health inequities to implementing interventions to address them.
  7. Sustaining health equity as a priority area for action. Tucker-Seeley pointed out that the workshop could not comprehensively cover all aspects of cancer care disparities. He urged participants and organizations to continue the conversation on promoting health equity and implementing measures to reduce and eliminate racial, ethnic, and other sociodemographic disparities in cancer care and cancer research.

Undoing Racism: Five Focus Areas for Operationalizing Equity

“The way to advance equity and social justice is to address and undo racism,” said Debra Joy Pérez, chief equity officer and senior advisor to the chief executive officer at U.S. Pharmacopeia (USP). The main barrier to advancing

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

equity, she said, is the intentional avoidance of addressing structural racism. Conversations are often derailed by “whataboutism,” a rhetorical strategy of changing the subject to deflect attention on structural racism (e.g., “what about poverty?” or “what about disabilities?”). “When you address racism, you are fundamentally addressing every other oppression,” Pérez said. “They are interrelated.”

She said USP is “very explicitly focused on operationalizing systems that advance equity” in the work that it does, and she discussed the following five focus areas that institutions consider as they work to counter the structural factors that sustain racism:

  1. Governance and power. Consider how the institutional governance intentionally or unintentionally contributes to structural racism, Pérez said. Identify who holds the power in the organization to undo racism and advance equity.
  2. Accountability and metrics. Use data to demonstrate the impact of structural racism and SDOH on patient outcomes, said Pérez. For example, she said differences in outcomes that are apparent when data are disaggregated by race can expose systemic inequities in the delivery of care.
  3. Communication. Pérez noted that the patient care experience affects health outcomes, including whether clinician behavior promotes transparency and trust and gives patients a sense of comfort and safety. Communication about patients’ needs and interests is important to understand how SDOH affect their ability to achieve good health.
  4. Systems and policies. Consider the extent to which the processes, policies, and systems of the institution take issues of structural racism and systemic bias into account and advance equity, Pérez said. Create accountability for focusing on equity in systems and policies.
  5. Capacity to understand. Pérez said health care professionals need education and training to understand the health impacts of structural racism and SDOH.

Pérez also stressed the need to explicitly commit funding in the institutional budget for eliminating disparities and advancing equity in health, suggesting that equity-related work should be one-third of an organization’s budget. Pérez said that measurement can be used to operationalize an institution’s progress toward advancing health equity. She noted that equity stems from policies and practices that tailor interventions and target resources to ensure fairness, adding that equity is not equality (i.e., the same for everyone). Inclusion is an intentional action, and belonging is an outcome of diversity, equity, and inclusion. Addressing structural racism in a way that is mind-

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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ful of intersectionality and SDOH requires allyship, Pérez said. An ally uses their power as a member of a dominant group to support persons in a non-dominant group. “All of us have the capacity within us to be an ally,” she said.

Social Risk Screening and Social Needs Navigation

Laura Gottlieb, professor of family and community medicine and director of the Social Interventions Research and Evaluation Network (SIREN) at the University of California, San Francisco, said that health care systems conduct a wide range of activities to collect information about patients’ social conditions (e.g., asking patients directly, conducting surveys and health risk assessments, purchasing consumer data about patients, using patient address data to link to neighborhood-level information).9 New social risk screening tools are also emerging, but Gottlieb noted the lack of consistency across the tools regarding the social domains included, the measures used, and the depth of the assessments.10

Gottlieb said that most patients are comfortable with being asked about their social risks (De Marchis et al., 2019) and that a majority of health care organizations are routinely screening for at least one social risk factor (Fraze et al., 2019). However, a review of 23 national surveys found wide variation in results, depending on the survey instrument and who was surveyed (patient, clinician, clinic, or hospital). In one survey of patients, for example, only 22 percent said their clinician had discussed social risk factors with them (Cartier and Gottlieb, 2020). Gottlieb added that payment incentives (e.g., social risk screening as a reimbursable quality measure) and technology support (e.g., incorporating SDOH information in the electronic health record [EHR]) are helping to facilitate uptake of social risk screening. She emphasized the need to create accountability for health equity, including through budgets, performance measures, or infrastructure.

Gottlieb raised three questions to examine in future research, as implementation of social risk screening continues: Are there unintended consequences, such as the potential to exacerbate patients’ real or perceived experiences of discrimination? Does screening in the absence of adequate resources to address identified needs contribute to moral distress of health care professionals, and how does that compare and contrast with the expectations of patients? Is screening necessary, or would patients be better served if information about social resources were provided to everyone? Rebekah Angove,

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9 For more information see Integrating Social Care into the Delivery of Health Care (NASEM, 2019a).

10 See the SIREN website for a comparison of currently available tools. https://sirenetwork.ucsf.edu/tools-resources/resources/screening-tools-comparison (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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vice president of patient experience and program evaluation at the Patient Advocate Foundation, noted that many health systems provide limited or no social risk screening because they do not have interventions to offer to address identified needs.

Angove described the importance of social needs navigation. Social needs navigators are trained to identify patients’ social and financial needs related to their care, and to connect them to resources to address their immediate needs. These navigators can, for example, facilitate access to safety net programs, help negotiate medical debt resolution, and identify appropriate insurance plans. Angove said social needs screening should be embedded into routine care so that patients can be connected to the right resources before they encounter financial crisis.

Social needs navigation is particularly important for individuals who face premature mortality due to gaps in care related to SDOH, such as individuals with low literacy skills, those who live in rural areas, or those who have limited resources, Angove said. She noted that some patients are hesitant to discuss social and financial needs with a health care professional for fear that their care will be affected by their ability to pay.

Building Trust as the Foundation for Operationalizing Equity

Building (or rebuilding) trust with patients and communities was an underlying theme discussed by many workshop speakers, who stressed that trust is the foundation for efforts to operationalize equity in cancer care.

Alma McCormick, a member of the Crow Indian Nation and executive director of Messengers for Health (see Box 5), explained that one barrier to achieving health equity for Indigenous peoples is a long-standing mistrust of the health care system, spanning generations who have experienced historical trauma and adversity. “Oppression hangs heavy over the Crow people,” McCormick said, and is “manifested in our physical environment, . . . our poverty level, [and] our health conditions.” In addition, concerns persist regarding the quality of care provided to Native Americans through the Indian Health Service (IHS), McCormick said. For example, she said communication between patients and clinicians is impaired by a lack of trust and by structural racism. In addition, she recalled instances in which Indigenous patients with cancer were misdiagnosed, or received a delayed diagnosis of cancer, leading to worsened patient outcomes.

In the Crow culture, health encompasses the mind, body, and spirit working in harmony. McCormick said forgiveness is key to being able to overcome historical trauma and move forward. There is power in being able to forgive, but she emphasized that forgiveness is not acceptance. The path to physical

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

and spiritual healing requires the research and health care communities to establish a trusting relationship with Indigenous communities, McCormick said. She emphasized the importance of approaching populations affected by health disparities in a manner that builds trust, including listening, understanding cultural practices, and partnering in a mutually respectful manner. She also recommended leveraging trusted community leaders, and noted that building trust takes time.

Reed Tuckson, co-founder of the Black Coalition Against COVID and managing director of Tuckson Health Connections, agreed that establishing trust is the most important factor in promoting health equity. He said a primary source of the continued distrust of the medical and research establishments by the Black community is the Tuskegee syphilis study in the early

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

20th century.11 Tuckson noted that this distrust impeded efforts to combat the AIDS epidemic in the 1980s and is affecting efforts to mitigate the COVID-19 pandemic today. Tuckson said it is shameful that this distrust persists; he stressed that the delivery of equitable clinical care will continue to face challenges until trust is established.

Pérez emphasized that social justice and equity cannot be realized unless the mistakes of the past are acknowledged. Building a trusting relationship requires transparency and accountability, which she said includes honesty and acknowledging history. Trust also requires the creation of psychological safety—fostering an environment where individuals feel comfortable presenting their true selves without the fear of humiliation or judgment, she said.

Angove said trust can also be cultivated by bringing resources to patients and their communities. “Patients need help right now,” she said, and it is important to help them meet their day-to-day needs while working to overcome systemic racism and health inequities. For example, the Patient Advocate Foundation helps individual patients, through social needs navigation, while also working to solve the broader policy challenges facing communities. She stressed the need to invest in direct services that can help patients meet their immediate social needs while continuing to address systemic structural issues From an institutional perspective, the Centers for Medicare & Medicaid Services (CMS) is working to build trustworthiness through increased communication and engagement, said LaShawn McIver, director of the CMS Office of Minority Health. For example, CMS is conducting listening sessions across the agency to gather feedback that is used to inform policies and programs. “Open communication builds trust because communication builds relationships,” she said.

Creating the Infrastructure to Operationalize Equity in Health Insurance Plans

To better meet the needs of beneficiaries, CMS is working to ensure a shared understanding of SDOH across the agency, McIver said. For example, CMS is working to align and increase the collection of standardized demographic and SDOH data across multiple data sources, including the Medicare Current Beneficiary Survey, state-level assessments of the postacute care setting, and patient care and medical billing, through the use of “Z codes,” to document SDOH data.12 McIver said the analysis of demographic and SDOH

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11 See https://www.cdc.gov/tuskegee/timeline.htm (accessed May 23, 2022).

12 For more information on Z codes, see https://www.cms.gov/files/document/zcodesinfographic.pdf (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
×

data—such as the CMS Stratified Reporting13 and Mapping Medicare Disparities14 tools—can help to inform policy decisions and to identify populations and geographic areas for potential interventions. McIver reported that the CMS Chronic Condition Data Warehouse15 could also be used to study disparities in cancer care. She called for the creation of an enduring infrastructure for equity that spans departments across federal agencies.

CMS also provides training, outreach, and education on collecting and using standardized demographic and SDOH data to drive improvements in care and outcomes, McIver said. One-on-one technical assistance from CMS is also available, and she said that any organization can contact CMS for help with disparities-related issues (e.g., guidance on collecting or analyzing data, implementing a cancer treatment quality improvement activity, specific population- or clinician-targeted interventions, creating a heath equity governance structure).16

Tuckson drew on his experience as former executive vice president and chief of medical affairs for United Health Group to highlight key areas where health insurance plans can focus their efforts to operationalize equity in cancer care.

Establishing trust. As discussed earlier, Tuckson said that establishing trust is paramount and underpins all other activities that health insurance plans undertake.

Cancer prevention. Tuckson emphasized that prevention and screening efforts are needed to address disparities in preventable cancers, and these efforts need to be “supported by robust community-level engagement.”

Providing patient-centric care/educating health care consumers. Health insurance plans and their clinical partners need to confront the chronic underinvestment in education, Tuckson said. Many people lack sufficient health literacy to understand their disease and available treatment options and to participate meaningfully in their medical care.

Developing the evidence base. The lack of trust in clinical research creates challenges for enrolling diverse populations in the clinical trials needed to ascertain the effectiveness of interventions. The lack of representation in clinical research threatens the generalizability of these findings and may exacerbate existing disparities, said Tuckson.

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13 See https://www.cms.gov/About-CMS/Agency-Information/OMH/research-and-data/statistics-and-data/stratified-reporting (accessed May 23, 2022).

14 See https://www.cms.gov/About-CMS/Agency-Information/OMH/OMH-Mapping-Medicare-Disparities (accessed May 23, 2022).

15 See https://www2.ccwdata.org/web/guest/home (accessed May 23, 2022).

16 The CMS Health Equity Technical Assistance Program can be reached at HealthEquity TA@cms.hhs.gov.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Data aggregation, integration, and analytics. Tuckson said that artificial intelligence analytics systems used to inform health plan operations need to address the potential for algorithmic bias—or “the instances when the application of an algorithm compounds existing inequities in socioeconomic status, race, ethnic background, religion, gender, disability, or sexual orientation to amplify them and adversely impact inequities in health systems” (Panch et al., 2019). Health insurance plans can also promote participation in registries to enhance the collection of clinical, sociodemographic, and claims data, and he suggested including patient experience with care as a measure of quality and value to promote accountability.

Improving coordination among patients, clinical teams, and insurers. Patient navigators and care managers from health insurance plans and clinical practices need to partner effectively to better coordinate care, Tuckson said. A holistic approach also includes improved coordination of care among the multidisciplinary and multispecialty workforce taking care of patients with cancer (e.g., oncology, cardiology, endocrinology, primary care), which can affect patient outcomes.

Improving access to high-quality, affordable care. Health insurance plans have a role in addressing the rising costs of care and drug prices and ensuring the value of care for patients, especially among socioeconomically disadvantaged patients and communities, Tuckson said. This includes identifying specialty network care providers and centers of excellence that provide high-quality care and good patient outcomes and are also cost effective.

IMPROVING EQUITABLE DELIVERY OF HIGH-QUALITY CANCER CARE

A number of workshop speakers highlighted opportunities to improve equitable access to high-quality cancer care, including discussion of roles for health care professionals, payers, and health care systems.

The Role of Health Care Professionals in Improving Access to Equitable Cancer Care

Physicians have prominent leadership roles in the health care system, and have the capability to advocate for actions to promote health equity, said Kemi Doll, associate professor of gynecologic oncology at the University of Washington and founder of the Endometrial Cancer Action Network for African-Americans (ECANA).17 However, Doll said physicians are “operating in a soci-

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17 See https://ecanawomen.org (accessed May 23, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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ety of interlocking, inequitable structural systems,” and that many physicians who are committed to improving equity and outcomes through their clinical work believe they have no capacity to address SDOH issues in their health system or in other sectors of society. When those with power and autonomy in one system (in this case, the health system) feel helpless to address an issue in another system (e.g., food or housing insecurity), it results in avoidance of the issue altogether, she said, and this can perpetuate health disparities.

Doll said moving from avoidance to action requires clinical team members—including physicians—to have curiosity, courage, and commitment. She said clinicians need to ask patients about their social risk factors, and adapt care plans to deliver personalized, equitable care that meets patients’ medical and social needs. In addition, Doll said that clinicians should advocate for policy changes to promote health equity at the hospital level, and that these efforts should be supported by professional societies. Doll also said funders, academic institutions, and health care systems should prioritize health equity and dedicate resources to create sustainable career pathways in health equity.

As an example of putting these steps into practice, Doll described how she founded ECANA to help address the significant disparity in 5-year endometrial cancer mortality between Black and White women. ECANA works to create a supportive community, educate the public and health care professionals, and partner with researchers. For example, ECANA is involved in the Social Interventions for Support During Treatment for Endometrial Cancer and Recurrence Study, a national randomized controlled trial of the impact of social support interventions on endometrial cancer outcomes for Black women.18

Taking the Time to Provide Equitable Cancer Care

Adrienne Moore, a patient advocate with ECANA and a two-time cancer survivor, shared her personal story of receiving conflicting diagnoses from two clinicians (see Box 6). Moore said by deliberately and decisively taking the time to establish an equitable relationship, a clinician can understand a patient’s lived experiences and their ability to understand the benefits and risks of potential interventions, and take these into account when identifying a course of action. Building an equitable partnership with a patient builds trust and empowers them to participate in making decisions about their care, which influences treatment adherence and creates a shared responsibility for outcomes, she added. Health care professionals can also spend time identifying solutions to eliminate barriers to potential treatment options and improve

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18 See https://clinicaltrials.gov/ct2/show/NCT04930159 (accessed May 23, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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quality of life, including improved access to social services and mental health care. Taking time, Moore concluded, results in patients who feel seen and heard by their clinicians.

The Role of Payers and Health Care Systems in Supporting Access to Equitable Cancer Care

Opportunities to Close Gaps in Coverage to Improve Access and Health Equity

Stacie Dusetzina, associate professor of health policy and Ingram Associate Professor of Cancer Research at Vanderbilt University School of Medicine,

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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highlighted some of the gaps in health insurance coverage that impede the ability of people with cancer to access care and offered policy solutions to improve access and health equity.

Expanding insurance coverage to individuals who are uninsured. One policy approach to improving access to cancer care, Dusetzina said, is to expand Medicaid eligibility in the 12 states that have not yet done so under the 2010 Patient Protection and Affordable Care Act (ACA).19 Another option for obtaining health insurance is the health care marketplace established by the ACA, but Dusetzina noted that better guidance is needed to help people select marketplace plans that are appropriate for their situation. For example, many people sign up for plans with low-cost monthly premiums, but these plans may have high out-of-pocket deductibles that need to be met when obtaining health care.

Improving Medicare coverage of care. Dusetzina said there is a policy opportunity to improve the coverage and selection of benefits provided through Medicare. She shared data showing that one in six Medicare beneficiaries said they had health care cost–related challenges in 2018, with Black beneficiaries reporting cost problems more frequently than White beneficiaries.20 People with a traditional Medicare plan without supplemental insurance coverage pay 20 percent of the cost of all health care services, which can be very costly for those receiving cancer care, she said. While individuals enrolled in a Medicare Advantage plan might have better coverage, an appropriate cancer specialist might not be in-network, resulting in high out-of-pocket costs for out-of-network care.

Capping out-of-pocket prescription drug costs under Medicare Part D. Dusetzina said that approximately one in three Medicare beneficiaries who do not receive low-income subsidies do not fill their prescriptions for anticancer medications (Dusetzina et al., 2022). She suggested that there is an opportunity to improve access to cancer drugs by capping out-of-pocket costs in Medicare Part D.

Lowering costs for those covered by employer-sponsored health insurance. Among the challenges for those insured through an employer are that lower-paying jobs commonly provide less generous insurance benefits, said Dusetzina. To keep premiums affordable, she said some plans are raising deductibles, which can be unaffordable for some patients. Dusetzina suggested that employer-sponsored health plans place a monthly cap on the deductible

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19 See https://www.kff.org/medicaid/issue-brief/status-of-state-medicaid-expansion-decisions-interactive-map (accessed February 11, 2022).

20 See https://www.kff.org/report-section/cost-related-problems-are-less-common-among-beneficiaries-in-traditional-medicare-than-in-medicare-advantage-mainly-due-to-supplemental-coverage-issue-brief (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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owed; reduce out-of-pocket maximums; ensure the adequacy of the care provider network; and assess the availability of supplemental coverage options.

Supporting Health Care Professionals in Reducing Inequities in Care and Outcomes

The U.S. Department of Veterans Affairs (VA) asks veterans to consider what matters most to them, and then helps veterans achieve their personal goals for physical, mental, emotional, social, and spiritual health, said Ernest Moy, executive director of the Office of Health Equity at the Veterans Health Administration. Moy noted that there are health disparities among veterans. For example, while Black veterans have higher rates of screening for breast, cervical, and colorectal cancers relative to White veterans, they also have higher relative rates of cancer mortality, even when rates are adjusted for comorbidities (Wong et al., 2019). He said this suggests that delivering the same care to all veterans is not meeting the personal health needs of individual veterans.

As a health system, the VA has dedicated health care professionals and researchers working to examine health disparities and identify potential interventions to reduce these disparities, an infrastructure for quality improvement, and the ability to connect veterans to the social supports needed to address SDOH, Moy said. To better promote health equity, the VA is working to build a more diverse and inclusive workforce that reflects the population of veterans it serves, engaging social workers and veteran service organizations to help address SDOH, and developing resources to help clinicians reduce inequities in clinical care and health outcomes.

Moy said the Equity Quality Improvement Playbook21 is built on activities and resources already in place, such as the Primary Care Equity Dashboard that VA medical centers can use to analyze quality measures by race, ethnicity, and sex to identify local disparities. “When VAs have focused on reducing disparities, equity is improved, and overall quality is improved,” Moy said. He added that nine VA medical centers were able to reduce racial disparities in blood pressure control among veterans with severe hypertension by implementing locally relevant interventions (Burkitt et al., 2021).

Reimagining the Current Health Care Financing and Delivery System for Health Equity

Many speakers discussed opportunities to restructure the U.S. health care financing and delivery system to ensure equitable cancer care. Doll said it is

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21 See https://www.hsrd.research.va.gov/publications/forum/fall21/default.cfm?ForumMenu=fall21-1 (accessed April 1, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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time to “radically reimagine” the current system “because it is not working for anybody.” Tuckson called this a “moment of reckoning,” and called on participants in the health care system to prioritize health equity and address waste in health care. Topics discussed included restructuring priorities to reduce clinician burnout and enable them to better address patients’ SDOH; restructuring performance measurement to include measures of health equity; redesigning education of health professionals and researchers to embed health equity throughout their training; and rebuilding trust in the health care system.

Restructuring Clinical Priorities to Reduce Burnout and Facilitate Equitable Care

The quality and safety of health care depends on the well-being of those who are delivering patient care (NASEM, 2019b), and a number of workshop speakers called for dual action to reduce clinician burnout while also engaging clinicians to ensure the delivery of equitable cancer care. “Burnout is not an individual failure or a lack of resilience,” Doll said, it is “an expected consequence” of the largely profit-driven health care system. She said misaligned incentives within the health care system limit the ability of clinicians to truly connect with patients, to understand the broader circumstances that affect their health, and to advocate on their behalf. For many clinicians, Doll said that burnout can be countered by having a strong sense of purpose and knowing that one’s actions are making a difference in people’s lives. However, as discussed earlier, many clinicians are overwhelmed and feel powerless to address issues outside a patient’s medical care. Moy agreed and said the interventions that clinicians can offer to their patients do not typically address the SDOH that are often the root causes of a patient’s health problem. If clinicians are equipped to offer effective interventions to patients to counter health disparities, Moy thought clinicians would readily engage in these efforts.

Restructuring Performance Measurement to Ensure Accountability for Equity

Tuckson said that performance measurement for health insurance plans, hospitals, and health care practices is moving toward the inclusion of an equity performance measure, alongside quality, cost effectiveness, and patient experience. Cleo A. Ryals, associate professor at the Gillings School of Global Public Health and director of the Centering Racial Equity in Data Science Initiative at the University of North Carolina at Chapel Hill Lineberger Comprehensive

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Cancer Center,22 said performance measurement that emphasizes equity is critical to the delivery of high-quality care. Doll agreed and suggested that policy makers prioritize equity in restructuring health care financing and delivery.

Restructuring Professional Training to Include Health Equity

Doll pointed out that the education and training of clinicians and biomedical researchers are generally separate, and that SDOH and issues of equity are not typically prioritized for either one. She said there is a need for collaborative training opportunities involving the workforce for patient care and research. She added that biomedical research could be strengthened if researchers received training that embeds an equity lens.

Building Trust in the Health Care System

A number of speakers said that public trust in institutions continues to erode. As discussed earlier, mistrust of the health care system persists among populations who have experienced discrimination and historical trauma, said Christopher Lathan, chief clinical access and equity officer at Dana-Farber Cancer Institute, associate medical director of the Dana-Farber Cancer Institute Network, and assistant professor of medicine at Harvard Medical School. Several workshop speakers described the changes needed for the health care enterprise to earn the trust of those it serves and improve patient experiences when receiving medical care.

Doll said that “trust is eroding because [people] are not being taken care of,” and earning the public’s trust will require a fundamentally different approach to meeting people’s needs. For example, health systems need to understand the impact of the cost of parking on a patient’s ability to come for care, Doll said. Moy added that “trust comes from treating [a] patient with respect and dignity”; patients should feel comfortable being their “true and authentic selves” and not be made to feel bad for seeking care. Trust is built gradually by listening to patients, being transparent, and addressing their concerns. Dusetzina added that the current financial model of health care also erodes trust. A patient’s care is “a financial transaction” that is “dictated by the resources that they have and how they are insured,” she said.

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22 As of January 2022, Dr. Ryals’s affiliation is Head of Health Equity and Health Disparities Research, Flatiron Health.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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IMPACT OF GEOGRAPHY AND SETTINGS OF CARE ON ACCESS TO HIGH-QUALITY CANCER CARE

Lawrence Shulman, deputy director for Clinical Services at the Abramson Cancer Center and a professor of medicine at the University of Pennsylvania Perelman School of Medicine, said that equitable cancer care requires a vision for the future and collective will—including political will—to spur action and promote change in the system. An element of equitable cancer care that many workshop speakers discussed was the impact of geography and settings of care on the quality of cancer care and patient outcomes.

The Intersection of Race, Place, and Cancer Mortality

Monica Baskin, professor of preventive medicine and associate director for community outreach and engagement at the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham, discussed disparities in cancer mortality. In the United States, overall cancer mortality rates are higher for non-Hispanic Black persons and for individuals living in the Midwestern and Southern regions of the country, particularly in the rural Appalachian and Delta regions (see Figure 2).

Inadequate access to cancer care, particularly in rural areas, can exacerbate disparities. Baskin noted that an increasing number of hospitals in rural areas have closed over the past decade (many of which were located in regions of the country with high cancer mortality rates), and the challenges facing rural hospitals have been exacerbated by the COVID-19 pandemic. She said that biases can also perpetuate disparities, adding that implicit racial biases of oncologists have been shown to be associated with “shorter patient encounters, less patient-centered and supportive care, greater patient difficulty remembering contents of the interaction, less patient confidence in recommended treatment approaches, and a greater perceived difficulty completing treatment” (Penner et al., 2016). Clinician biases have also been shown to negatively affect interactions with potential clinical trial participants from minority populations (Niranjan et al., 2020).

Baskin discussed several opportunities to improve equitable access to high-quality cancer care, including increasing the diversity of the biomedical workforce, anti-bias training for health care professionals, raising awareness of clinical trials among populations underrepresented in clinical research, building trust between patients and the health care system, and expansion of Medicaid coverage in the states that have not yet done so.23

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23 For discussion of the impact of Medicaid expansion on cancer care and outcomes, see https://files.kff.org/attachment/Report-Building-on-the-Evidence-Base-Studies-on-theEffects-of-Medicaid-Expansion.pdf (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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FIGURE 2 Age-adjusted annual cancer death rates by state, 2015–2019 (for all cancers, races, sexes, and ages).
SOURCES: Baskin presentation, October 25, 2021, using data from State Cancer Profiles, http://statecancerprofiles.cancer.gov (accessed February 11, 2022).
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Baskin said the O’Neal Cancer Center is implementing a community health advisor model to build trust and reduce cancer disparities. In 26 of Alabama’s 67 counties, community members have been trained as lay patient navigators, providing community education about cancer prevention and helping to link people to screening and care. Baskin said these part-time paid staff and volunteers were selected because they are individuals that community members trust and turn to for information.

High-Quality Cancer Care for Rural Communities

Although the incidence of cancer is lower in U.S. rural communities, the mortality rate is higher (Garcia et al., 2017), said Ingrid Lizarraga, clinical associate professor of surgery at the University of Iowa Hospitals and Clinics. Factors contributing to this disparity include poor baseline health, lower access to cancer screening, and lower access to high-quality health care (Iglehart, 2018). When patients who live in rural areas participate in a clinical trial, however, survival is comparable to residents of urban areas, suggesting that delivering standardized, evidence-based cancer care could eliminate some geography-based disparities in patient outcomes (Unger et al., 2018).

Hospital accreditation, such as through the Commission on Cancer (CoC),24 has the potential to increase the delivery of evidence-based cancer care within rural settings, Lizarraga said (see also the section on Accreditation on page 40). However, she noted that most CoC-accredited hospitals are in urban areas, and that many rural hospitals lack the finances and workforce capacity to complete the resource-intensive accreditation process.

Lizarraga described the Markey Cancer Center Affiliate Network (MCCAN), launched by the University of Kentucky Markey Cancer Center in 2006, as a successful model of improving cancer care across the state. Many of the MCCAN member hospitals are in underserved rural areas of Kentucky. Hospitals need to become CoC accredited within 3 years of joining the network, and MCCAN has developed programs and resources to help network members with accreditation. Network hospitals can refer patients with complex cancer cases to the Markey Cancer Center and then provide follow-up care locally, and members are allowed to co-brand with MCCAN. A recent analysis found that 12 of 13 hospitals were able to achieve CoC accreditation within 3 years of joining MCCAN, and these hospitals demonstrated improved performance on cancer quality metrics (Tucker et al., 2021). MCCAN member hospitals also performed better than matched control non-MCCAN hospitals.

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24 See https://www.facs.org/quality-programs/cancer-programs/commission-on-cancer/standards-and-resources (accessed May 26, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Because many patients with cancer are treated at rural hospitals that lack CoC-accreditation, Lizarraga and colleagues are studying whether the MCCAN model can be successfully adopted in other rural states, such as Iowa. Some of the key lessons learned from the MCCAN model include the importance of tailoring the accreditation activities to the goals of the individual hospitals; ensuring access to Markey Cancer Center resources, such as peer-to-peer support, education, patient navigation, and quality improvement; mentoring physician champions; and building trust between the cancer center and rural hospitals, Lizarraga said.

Lizarraga noted that not all rural hospitals have the same challenges or opportunities, and optimizing cancer care is a local issue. Improving the equitable delivery of high-quality cancer care depends on models that support cancer care in smaller hospitals, she said, and patients should not have to travel long distances to an academic cancer center to receive high-quality care.

High-Quality Cancer Care for Indigenous Communities

Compared to the overall U.S. population, Indigenous peoples have higher rates of poverty, smoking, obesity, poor health status, as well as a higher percentage of individuals who are uninsured, said Mark Doescher, associate director for community outreach and engagement at the University of Oklahoma Stephenson Cancer Center. Doescher said cancer mortality rates for Indigenous populations living in Alaska, the Northern Plains, and the Southern Plains “far exceed corresponding rates in the general population.” The health needs of approximately 2 million people are served by IHS via IHS-operated service facilities, by tribally operated facilities that receive core IHS support, and through the Urban Indian Health Program that receives limited IHS support.

Doescher discussed a number of challenges and opportunities to the delivery of high-quality cancer care in these communities:

  • Costs. Direct and indirect costs are the most significant barrier to accessing cancer care among Indigenous communities, Doescher said. Potential solutions include increasing per-capita IHS payments (which Doescher said are less than half of VA per-capita expenditures); expanding Medicaid to increase insurance coverage; reducing out-of-pocket costs for cancer treatment; and providing assistance with transportation and lodging costs for patients who need to travel for treatment.
  • Health care workforce. Doescher highlighted the geographic variation in the workforce that supports cancer care, contributing to clinician workforce shortages within Indigenous populations. Doescher
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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  • suggested that workforce capacity could be improved through better prioritization of rural training tracks in surgery and primary care, educational loan repayment programs, creation of patient navigator workforce positions, and establishment of tribally affiliated health professions programs.
  • Patient-centered, coordinated care. The delivery of cancer care could be improved through enhanced coordination of care and better alignment with patient needs, Doescher said. Potential solutions included clinic hours that better match patient schedules; increased use of visiting oncologists who provide care at facilities that serve Indigenous populations; mobile screening vans; reimbursement for telehealth visits; and increased use of electronic health information exchange of EHR data to facilitate care at centers that serve American Indian and Alaska Native populations.
  • Clinician and patient awareness. Greater patient and clinician awareness of evidence-based cancer care—including guidelines for prevention, screening, treatment, palliative care, survivorship care, and clinical trials—are needed, Doescher said. This could be accomplished through public service announcements and community health education for patients; continuing health professional education; mentoring and technical assistance provided to community clinicians by academic colleagues; and development of survivorship care plans, he said.
  • Community culture, values, and tribal sovereignty. Doescher echoed the importance of fostering trust and added the need to protect individual and tribal rights and data sovereignty through the use of tribal/IHS institutional review boards and data sharing agreements.

High-Quality Cancer Care at Safety Net Hospitals

Public safety net hospitals provide critical health care services to vulnerable populations, including cancer care, said Neha Goel, assistant professor of surgery at the University of Miami Miller School of Medicine and Jackson Memorial Hospital (JMH). JMH provides more than $500 million in uncompensated care each year, which Goel said is 15 times more than the associated university hospital. JMH relies on annual taxpayer funding of more than $350 million (from a Miami Dade County sales tax and property taxes), funding from Florida’s Low Income Pool program, and philanthropy to help meet its $1.5 billion annual operating costs.

Goel said patients who receive care at safety net hospitals are often diagnosed with late-stage disease, and patients may be less likely to complete the complex and often time-intensive cancer treatments, which contributes to

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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worsened patient outcomes. However, Goel cited a study that found patients with early-stage stage breast cancer who are treated at a safety net hospital have similar outcomes to patients treated at an academic cancer center (Kelly et al., 2021).

Goel listed several interventions they have identified as helpful in addressing health disparities within the context of a public safety net hospital, such as:

  • Conducting structured surveys to assess social needs (e.g., patients report not having the time or transportation to come to treatment appointments).
  • Improving cancer screening rates to identify disease at an earlier stage.
  • Using care coordinators and patient navigators.
  • Administering interoperative radiation therapy where appropriate to reduce the need for postoperative treatment.
  • Creating a survivorship clinic.
  • Improving access to clinical trials.

Shulman observed that the success of models such as JMH are not necessarily representative of all safety net hospitals. In his experience, Shulman said safety net hospitals use their limited resources to meet a wide range of community health care needs (e.g., trauma, maternal and child health, infectious disease—all extremely important), but support for cancer care often falls lower on the priority list.

Reducing Disparities in Cancer Screening and Follow-Up Care

Heather Bittner Fagan, a family physician, professor, researcher, and chair of the Early Detection and Prevention Committee of the Delaware Cancer Consortium, said that the state of Delaware eliminated racial disparities in breast and colorectal cancer outcomes by using a comprehensive approach in which health systems and communities worked in partnership to increase community outreach and patient navigation to improve access to cancer screening and follow-up care, particularly for individuals who were uninsured or underinsured (Grubbs et al., 2013). Bittner Fagan said Delaware’s success in reducing disparities required political will and financial support from the Delaware government for the Delaware Cancer Consortium.

Patients who complete cancer screening are more likely to have a primary care clinician and to have received a checkup during the prior year, said Bittner Fagan. She highlighted the critical role of primary care clinicians across the continuum of cancer care (see Figure 3). Primary care practices are also begin-

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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FIGURE 3 The role of primary care across the cancer control continuum.
SOURCES: Bittner Fagan presentation, October 25, 2021, adapted from Zhao et al., 2020.

ning to address SDOH that contribute to cancer disparities. For example, Bittner Fagan said the primary care practices in her health system have or share embedded behavioral health counselors, social workers, and community health workers to assist patients in obtaining access to these services. Primary care clinicians are advocates for patients, especially vulnerable populations, across the spectrum of care, she said.

Bittner Fagan highlighted potential strategies to reduce disparities and improve access to high-quality cancer screening:

  • Clinician recommendation that a patient be screened for cancer is a strong predictor of that patient completing the screening (Hudson et al., 2012).
  • Decision aids and shared decision making improve patient understanding of their options and help patients make better care choices (Dickerson et al., 2020).
  • Patient navigation improves completion of cancer screening and care across the continuum (Dickerson et al., 2020).
  • Telehealth and digital technologies provide expanded access to care, but Bittner Fagan said there are disparities in access to technology, and vulnerable populations might need support to be able to benefit from these advances (Dickerson et al., 2020).
  • Delegating specific aspects of patient care to other members of the health care team can optimize the brief 15-minute patient encounter with a clinician (Fiscella et al., 2011).
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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OPPORTUNITIES TO SPUR PROGRESS TOWARD EQUITY IN CANCER CARE

Workshop speakers discussed a range of strategies and policies that could improve equity in cancer care and outcomes across the cancer continuum.

Building on the Momentum of NIH’s “Great Awakening”

To set the stage for discussion of policy levers and strategies that could promote equity in cancer care and outcomes, Robert Croyle, former director of the NCI Division of Cancer Control and Population Sciences, gave a brief overview of the role of the National Institutes of Health (NIH) in research on health disparities and health equity.

Croyle discussed several key events over the past four decades that he said helped spark a “great awakening” on health disparities at NIH (Box 7). He noted that in the past, there was some resistance to NIH addressing health inequities, which he attributed partly to disciplinary bias. Croyle said that some considered health disparities solely within the purview of the social sciences, and many basic and translational scientists were either unfamiliar with the topic or did not consider the field to be a component of biomedical science. Croyle added that some people did not believe it would be worthwhile to allocate resources to address health inequities because the challenges seemed too big, too hard, and too complex to solve, and not within the mission of NIH. Concerns were also raised that the issue was too political and controversial; arguments were made that health care delivery is a policy issue, and not the domain of scientific research. Croyle reflected that there was “an underappreciation of the role that evidence can play in driving policy.” NIH research also focused primarily on patients enrolled in clinical trials, who are typically not representative of populations seen in clinical practice, including populations who historically have been medically underserved.

The renewed focus on health disparities and health equity at NIH has been transformative, Croyle said, rooted in movements focused on social justice and catalyzed, in part, by violence against people of color, including the murder of George Floyd. Croyle noted that the NIH director publicly apologized in March 2021 for structural racism in biomedical research funding.25 He added that there has been rapid mobilization to support diversity, equity, and inclusion across the agency through the UNITE initiative.26 He noted that NIH is “only one player in a complex landscape,” but observed that other institutions and organizations are taking similar steps.

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25 See https://www.nih.gov/about-nih/who-we-are/nih-director/statements/nih-stands-against-structural-racism-biomedical-research (accessed May 24, 2022).

26 See https://www.nih.gov/ending-structural-racism/unite (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Croyle suggested opportunities for sustaining momentum and building on the great awakening at NIH, emphasizing that effective and informed leadership across the agency is essential. Opportunities include the following:

  • Continue efforts to integrate the social and biomedical sciences and training programs (e.g., the Robert Wood Johnson Health and Society Scholars program).
  • Revitalize the Agency for Healthcare Research and Quality and expand research on the health care delivery system.
  • Strengthen performance measurement and standards for health equity.
  • Increase support and flexibility for the Cancer Control Programs of
  • the Centers for Disease Control and Prevention (CDC). Croyle noted
Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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  • that although the NIH budget has increased, the budget for the cancer control program at CDC has not.
  • Continue to strengthen the NCI-Designated Cancer Centers, especially the requirement for cancer centers to conduct community outreach and engagement.
  • Increase investment in health disparities and health equity research. Croyle emphasized the need for greater prioritization of research on implementation science, policy research, and international comparative studies. He added that the NCI Division of Cancer Control has doubled its research funding for health disparities and health equity research over the past 4 years.

Opportunities to Improve Equity in Cancer Care for Rural and Indigenous Communities

Katie Cueva, assistant professor of health policy at the Institute for Social and Economic Research at the University of Alaska, Anchorage, shared how Alaska is working to improve equitable, culturally relevant cancer care across vast geographic regions of the state, many of which do not have hospitals. “There is not one Alaska Native identity or one solution that will fit every community,” Cueva said. Alaska’s 229 federally recognized tribes are culturally diverse and speak many different languages. Alaska Native communities have strong traditions and cultural values; many of these are common, but Cueva said some are unique to individual communities.

Approximately 20 percent of Alaskans are eligible to receive health care through the Tribal Health System. Because many Alaskans live in very remote areas, the state has implemented a unique system of Community Health Aides and Community Health Practitioners (CHA/P), which also includes dental health aides and behavioral health aides.27 Cueva said village clinics are staffed by CHA/Ps practitioners from the community. Because they are generally the only health care practitioners in the area, the scope of practice for a CHA/P can be very broad. The extent of their scope of practice depends on their individual experiences and areas of expertise, and requires an association with a mid-level health care practitioner who can write standing orders that allow the CHA/P to provide particular services (Golnick et al., 2012). Patients who have a health care need that is beyond the scope of practice of the CHA/P can be referred to a regional hub community with a hospital. If more extensive care is needed, patients can be referred to the Alaska Native Medical Center in Anchorage.

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27 See https://akchap.org (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Cueva said another opportunity for improving access to care in Alaska is telemedicine, which links patients to physicians in hub communities or in Anchorage. She noted that patients can access telemedicine from home or can go to a village clinic for a secure, high-speed Internet connection. Mobile cancer screening is also available, such as the Southeast Alaska Regional Health Consortium WISEWOMAN mobile mammography program.28 There are also itinerant screening services, such as a week-long colonoscopy clinic at a hub community (Redwood et al., 2012). Cueva also discussed the importance of providing cancer education to remotely located Alaskans, and she mentioned several programs to provide culturally relevant online cancer education (Cueva et al., 2019).

Cueva stressed the importance of listening to communities to learn what they need and want; to understand what is culturally acceptable to them; and to continue to observe as programs are implemented, to understand what is working, what could be done better, and what needs are still unmet.

Opportunities for Nurses to Improve Equity in Cancer Care

Engaging nurses in the development of policies for health education, clinical practice, and research can help to ensure that patient and community priorities for addressing cancer inequities are addressed, said Jennifer Wenzel, associate professor and director of the Ph.D. and postdoctoral programs at the Johns Hopkins University School of Nursing. She said the goal is to implement sustainable community solutions that can have a lasting impact on cancer prevention, screening, treatment, and survivorship care. To accomplish this, she suggested:

  • Building mutually beneficial relationships with patients, families, and communities through thoughtful questions and listening.
  • Engaging those who are most affected by cancer and those who have been historically excluded (e.g., racial and ethnic minority communities, LGBTQIA+ communities, people with disabilities, people living in poverty, and those for whom geography creates disparities).
  • Involving leaders from faith-based, social, civic, and other community organizations.
  • Ensuring transparency in communication.
  • Compensating leaders in community partnerships for their time and expertise.

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28 See https://searhc.org/service/wisewoman (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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“Nursing can be a path forward to health equity,” Wenzel said, citing the National Academies report The Future of Nursing 2020–2030: Charting a Path to Achieve Health Equity (NASEM, 2021). She also suggested deploying a “social justice roadmap” to help promote an understanding of health equity across nursing education, practice, research, and leadership (Reutter and Kushner, 2010). Nursing education, for example, could promote understanding of the social, environmental, and structural conditions that can lead to health inequities and guide nurses in taking action to influence policies and practices that address SDOH. She said that education about health equity needs to span all educational contexts, from primary and secondary school pipeline programs for nursing school entry to professional orientation, mentoring, and continuing education for the current nursing workforce.

Using Accreditation to Spur Progress in Health Equity in Cancer Care

CoC is a “consortium of organizations dedicated to improving survival and quality of life for cancer patients through standard setting, prevention, research, education, and monitoring of comprehensive quality care.”29 Timothy Mullett, chair of CoC and professor of surgery at the University of Kentucky, said that more than 1,500 cancer centers in the United States are accredited by CoC, representing approximately one-quarter of all U.S. hospitals. CoC-accredited hospitals deliver cancer care to nearly three-quarters of all U.S. patients with cancer. To earn CoC accreditation, hospitals need to demonstrate compliance with evidence-based standards for cancer care.

Mullett said that CoC is committed to fostering equity, diversity, and inclusion, and recently launched a task force that will continue to examine how CoC can address these issues in its accredited programs through standards. The task force will also develop a toolkit for cancer programs, providing resources, tools, and best practices, as well as education on using the National Cancer Database for data analysis. Mullett said a review of CoC standards found no evidence of bias, but he said the review identified opportunities to make a greater impact in fostering equity, diversity, and inclusion. For example, site reviewers could be trained to identify disparities during the accreditation process and suggest strategies to address them.

Mullett said that CoC is working to increase equity, diversity, and inclusion in CoC membership and leadership. He added that recruiting and sup-

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29 See https://www.facs.org/quality-programs/cancer-programs/commission-on-cancer/about/ (accessed March 24, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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porting rural hospitals in achieving CoC accreditation is another opportunity to promote equity and ensure the delivery of evidence-based cancer care.

Because all 1,500 accredited cancer centers employ CoC-standardized structures across the continuum of cancer care (including cancer prevention and screening, genetic testing and counseling, cancer treatment, rehabilitation, palliative care, survivorship care, patient navigation, and others), there are opportunities to identify disparities at the community level and develop tailored strategies for improvement (e.g., language services, patient education). Standardized data from each hospital cancer registry are collated in the National Cancer Database,30 which Mullett said facilitates stratified analysis of local population data to identify disparities. Standardized data collection and analysis also enable assessment of compliance with CoC quality improvement measures; for example, Mullett shared data demonstrating that rural cancer hospitals that had higher compliance with CoC measures were associated with improved patient outcomes (Tucker et al., 2021).

Public Health Opportunities to Accelerate Health Equity in Cancer Care

“Who you are, where you live, and what your income is should not be risk factors for cancer or have an impact on what options are available to you to fight cancer,” said Lisa Richardson, director of the division of Cancer Prevention and Control at CDC. In January 2021, Richardson noted that President Biden issued an executive order that “challenged every governmental agency to develop a plan to address racism as a cause of poor health outcomes in the United States.”31 In April 2021, the CDC director issued a statement that declared “racism is a serious public health threat,”32 and charged CDC leaders to expand efforts to address racial disparities in health and to embed equity into all aspects of the agency’s work. Although there has been progress, Richardson said much work needs to be accomplished: “Now is the time to determine a bold course of action to address structural and systematic issues that cause health disparities.”

One of the ways CDC is working to make systematic change is through the two large evidence-based cancer screening programs. The National Breast

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30 See https://www.facs.org/quality-programs/cancer/ncdb (accessed April 1, 2022).

31 See https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-advancing-racial-equity-and-support-for-underserved-communities-through-the-federal-government (accessed February 11, 2022).

32 See https://www.cdc.gov/media/releases/2021/s0408-racism-health.html (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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and Cervical Cancer Early Detection Program33 funds 70 programs that provide timely access to breast and cervical cancer screening, diagnosis, and treatment services to women who have low incomes or are underinsured or uninsured. The Colorectal Cancer Control Program34 provides funding to support the implementation of evidence-based interventions to increase colorectal cancer screening, also with a focus on reaching underserved communities. Richardson added that these cancer screening programs provide patient navigation services so that people are able to receive prompt follow-up, referral, and treatment when needed. Richardson noted that cancer screenings declined significantly during the early phase of the COVID-19 pandemic, resulting in a backlog of more than 9 million missed screenings for breast, colorectal, and prostate cancers (Chen et al., 2021). Of great concern is the impact this backlog will have on timely screening for underserved communities.

Richardson said that forthcoming CDC programs will need to consider how to measure the extent to which an intervention has improved inclusion and equity. Programs that used the SMART (specific, measurable, achievable, relevant, time-related) framework for objectives have been expanded to SMARTIE, with emphasis on evaluating Inclusion and Equity.

Opportunities to Advance Health Equity Through Oncology Value-Based Care Models

The CMS Center for Medicare & Medicaid Innovation (CMMI) was created under the ACA to develop and test innovative payment and service delivery models to reduce costs and improve the quality of patient care, said Dora Hughes, chief medical officer at CMMI. Over the past decade, CMS has launched more than 50 payment model demonstration projects involving nearly 1 million participating clinicians and more than 26 million beneficiaries.

One of CMMI’s five strategic objectives for the coming decade is advancing health equity. Hughes said there are opportunities to embed equity into its payment models across the life cycle, from conceptualization to taking the model to scale. The agency plans to develop new models and modify existing models to better incorporate equity and address SDOH. CMS is focused on expanding the number of beneficiaries from underserved communities who participate in the models, as well as the number of participating practices who take patients with Medicare and Medicaid insurance, including safety net care providers. Demographic and SDOH data collection by participating practices

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33 See https://www.cdc.gov/cancer/nbccedp/index.htm (accessed April 1, 2022).

34 See https://www.cdc.gov/cancer/crccp/index.htm (accessed April 1, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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will be strengthened, and all models will be evaluated for their impact on health equity, Hughes said.

CMMI’s first oncology care model was launched in 2016 with the objective of providing better care coordination to improve the quality of care and to reduce costs. Participating practices in the model are implementing six practice redesign activities, Hughes said, including (1) patient navigation, (2) care plan development, (3) 24/7 access to a clinician, (4) use of evidence-based therapies per national guidelines, (5) data-driven quality improvement, and (6) use of certified EHR technology. The oncology care model incorporates financial incentives for participating practices based on performance, as well as per-beneficiary, per-month payments.

Thus far, 120 participating practices (representing more than 6,000 clinicians) and 5 payers are participating in the oncology care model, Hughes said, and an estimated 100,000 Medicare fee-for-service beneficiaries have been served each year. The model will run through mid-2022. Upon completion of this demonstration phase, the model will be fully evaluated and will be adapted based on the findings.

Opportunities to Address the Impact of Intersectionality on Equitable Cancer Care

Eliseo J. Pérez-Stable, director of the National Institute on Minority Health and Health Disparities at NIH, outlined four main strategies the scientific community can pursue to reduce health disparities and promote health equity:

  1. Standardize measurement of demographic and social factors that affect health.
  2. Promote diversity of the scientific and clinical workforce.
  3. Cultivate community engagement and build trust for sustainable relationships.
  4. Implement evidence-based approaches for improving health equity.

Some of the approaches known to promote equity in health care include expanding access to care (e.g., by expanding health insurance coverage and increasing the diversity of the clinician workforce); deploying evidence-based public health and clinical approaches (e.g., cancer prevention and screening); coordinating care (e.g., patient navigation); using a patient-centered care model that engages primary care clinicians; incorporating effective communication; demonstrating respect for diverse cultures; using information tech-

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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nologies (including EHRs) to identify and address inequities; and developing quality measures in the domain of equity, Pérez-Stable said.

Some of the observed health disparities among people of color are attributable to factors such as insurance status, an issue of access that can be addressed, Pérez-Stable said. For example, he cited an analysis that found nearly half of racial and ethnic disparities in the stage of breast cancer diagnosis are mediated by health insurance coverage (Ko et al., 2020).

Pérez-Stable said studies suggest that concordance of patient and clinician race results in longer and more patient-centered visits (Cooper et al., 2003; Jetty et al., 2022). However, the current composition of the physician workforce does not reflect the diversity of the population of the country; Pérez-Stable said there is an urgent need to develop a more diverse medical and scientific workforce to better meet the needs of the 40 percent of patients who identify as members of racial and/or ethnic minority communities.

Primary Care Opportunities to Advance Cancer Care Equity

Pérez-Stable said that primary care clinicians could take on a greater role in managing a patient’s care across the cancer care continuum, and emphasized the critical role of patient–clinician communication in fostering greater patient satisfaction, improved treatment adherence, and better patient outcomes. He said primary care clinicians, including general internists and family physicians, can be better suited to manage the care of cancer survivors because they handle the broad range of issues occurring throughout the body, while the medical or surgical oncologist is often acutely focused on cancer.

However, Croyle observed that transferring the care of cancer survivors from the oncology practice to the primary care practice can be challenging, and he said that primary care clinicians need better support to deliver survivorship care. Providing this care is especially challenging for primary care practices in underserved areas where, he said, “primary care practitioners are already overwhelmed.”

Mullett agreed and added that when patients from underserved communities develop trusting relationships with their oncology team, they can feel uncomfortable returning to their primary care setting for survivorship care. Wenzel noted that survivorship care can be provided by oncologists and primary care clinicians working in collaboration, such as through survivorship clinics at Johns Hopkins. She added that cancer survivors frequently have comorbidities that need to be managed, and these can be more common in patients from underserved communities.

Cueva and Hughes noted that, in addition to primary care clinicians and oncologists, patient navigators, social workers, and community health workers are critical to providing high-quality cancer care across the continuum. “We’re

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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dealing with people, not cancers,” Richardson said. Mullett and Pérez-Stable emphasized the need for effective, coordinated handoffs across the cancer care continuum. Mullett said CoC developed survivorship care plans to help communicate information about the patient’s cancer treatment to the primary care clinician. However, survivorship care plans have not been as effective in practice as expected. CoC-accredited programs are now focusing on communication about specific aspects of survivorship care (e.g., nutrition, rehabilitation) to better support primary care clinicians in delivering survivorship care. Hughes noted that models of accountable care, which are designed to improve quality of care and reduce costs, require collaboration and coordination of care between primary care clinicians and specialists. She added that CMS is working to have all Medicare beneficiaries in accountable care relationships by 2030.

Leveraging Partnerships to Advance Equity in Cancer Care

Workshop speakers highlighted the need to work in partnerships to advance equity in cancer care, especially by engaging patients and the community as core members of the partnerships. Pérez-Stable observed that partnering with the community requires changes in behavior, attitudes, and communication strategies for scientists and clinicians, who may not be used to working in partnership with a community. He added that one does not have to be from a particular community to partner with that community. He said having cultural humility and being respectful are more important than one’s background.

Hughes said CMS is increasing its partnerships with sister agencies, such as the Health Resources Services Administration, “to complement each other’s work and to leverage each other’s resources.”

Wenzel and Mullett discussed the importance of engaging patient navigators as partners in achieving health equity. Nurse navigators and community health workers understand the community and SDOH that affect patients, but patient navigation services are not consistently available to patients. “These roles have been created to interface directly with communities,” Wenzel said. Mullett added that navigation is especially important for ensuring communication and care continuity when patients are receiving care at multiple facilities.

Prioritizing Initiatives

Given the broad range of approaches to spur progress in health equity, Randy Jones, professor, associate dean for partner development and engagement at the University of Virginia School of Nursing and the assistant director

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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of community outreach engagement at the University of Virginia Comprehensive Cancer Center, asked panelists to discuss key priorities for action.

Croyle said that NCI’s prioritization process for programs and funding is data driven (e.g., cancer surveillance data on trends in different sub-populations). Because the amount of data available for different population groups varies, NCI also consults the research literature to identify gaps to be addressed. He noted that the NIH research funding portfolio on cancer control for underserved populations is very small, and NIH is assessing how to allocate future funding to improve prioritization of research focused on populations that have been historically underserved. Croyle acknowledged that research funding is often not driven by what’s most important for public health. He stressed that health equity needs to be a funding priority, alongside exciting new basic and translational science innovations. Croyle added that NCI-Designated Cancer Center funding renewals include a requirement for community outreach and education for their catchment area, which could also facilitate community representation in cancer center research priorities.

Richardson said CDC considers the potential impact of initiatives on fairness and social justice. For example, elimination of cervical cancer has been chosen as a goal because it is preventable and disproportionately affects women of color and those with low incomes. Richardson added that many women who are diagnosed with cervical cancer have not been screened previously.

Hughes said that CMMI has set a strategic objective to develop new models and modify existing models to better address SDOH and improve health equity. She noted that a 10-year review found that “in many of our models, we don’t have as diverse of a base of beneficiaries as we would like. . . . We want to increase the number of beneficiaries from underserved communities, and that will take a deliberate effort.” Hughes said this will effort will involve engaging more safety net providers, including practices who provide care to individuals with Medicaid insurance coverage.

Mullett added that CoC-accredited facilities are expected to examine the needs of the community they serve, adopt community-driven priorities, and address barriers that community members face in receiving cancer care. Cueva said it is important to focus resources where disparities are greatest but added that it is essential to respond to community requests for assistance and prioritize resources to areas the community deems most pressing. She added that services or interventions designed without an understanding of the community’s geography, culture, language, capacity, or interests are less likely to be successful.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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FROM ASPIRATION TO IMPLEMENTATION: THE ROLE OF ACADEMIC CANCER CENTERS IN PROMOTING HEALTH EQUITY

At the workshop, five current and former directors of NCI-designated academic cancer centers shared examples of how cancer centers are implementing innovative community and research partnerships to reduce disparities and achieve health equity in cancer care and outcomes.

Cancer Centers Expanding the Scope of Cancer Research to Expand Who Benefits

When the National Cancer Act was passed in 1971, the “war on cancer” was focused on understanding the biology of cancer in order to identify new treatments to reduce cancer mortality, said Robert Winn, director of the Virginia Commonwealth University (VCU) Massey Cancer Center. At that time, he said there was no attention on SDOH that affect cancer risk and mortality. Winn noted that the past 50 years of cancer research have led to significant advances in cancer treatment—including advances with chemotherapy, immunotherapy, molecularly targeted therapy, surgery, and radiation. For the next 50 years, Winn said it is insufficient to focus exclusively on understanding the biological aspects of cancer; there is a critical need for rigorous, concurrent research on understanding the day-to-day factors that affect people’s lives and health, including the impact of place (i.e., where one lives). He suggested fostering a new scientific discipline in cancer research that is a convergence of biology, engineering, and the social sciences. Although there has been some progress in increasing diversity in the cancer research community, Winn said additional steps are needed to promote diversity of the biomedical workforce and to address disparities in cancer care and cancer research.

Operationalizing equity requires that people make it a priority, said Winn. Cancer centers are transitioning from focusing primarily on basic and translational science to taking a broader view of the factors that affect cancer risk, treatment success, and patient outcomes. Included in that is a focus on engaging communities as equal partners, and Winn suggested that the approaches cancer centers use for community engagement need to evolve. For example, he said VCU Massey Cancer Center includes a “community cabinet” that convenes community members alongside people who provide philanthropic support to the cancer center—noting that these individuals would not otherwise find themselves at the same meetings. Cancer centers are also working to build trustworthiness among the communities they serve. Winn said the pandemic clearly revealed how a lack of trust in science and medicine reduced the impact of public health interventions designed to protect people

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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from COVID-19. If communities do not trust science and medicine, Winn stressed that life-saving advances “will be useful for some, but not all.”

Innovative Models of Partnership and Engagement at Cancer Centers

The Center for Health Outcomes and Population Equity (HOPE)

The Huntsman Cancer Institute (HCI) at the University of Utah is the only NCI-Designated Cancer Center in the Mountain West, serving Utah, Nevada, Idaho, Montana, and Wyoming at its four locations in Utah and through partnerships with affiliate hospitals. Cornelia Ulrich, chief scientific officer and executive director of HCI, noted that 80 percent of Utah is considered rural or frontier,35 and many areas become inaccessible by road during winter storms. HCI’s range of community outreach and engagement strategies includes health promotion, community presentations, community health and cancer screening events, patient navigation, policy and advocacy, statewide coalition work, and research.

Ulrich described the HCI Center for Health Outcomes and Population Equity (HOPE) as a model for strategic partnering for sustainable community engagement.36 Potential partners are grouped into three main categories of increasing collaboration: network partners who share and disseminate information; development partners who work together to develop projects and proposals and discuss shared priorities and opportunities; and research partners who are engaged in long-term formal relationships and shared decision making for research projects or programs. Ulrich stressed that bidirectional communication and mutual respect for expertise among the partners have been key elements of success for this approach.

To reach underserved communities in Utah, the Center for HOPE partners with the Association for Utah Community Health and 13 independent Utah community health centers. These health centers operate 54 clinics, approximately half of which are in rural or frontier counties, and serve more than 167,000 people annually. The communities served are racially and ethnically diverse (e.g., 49 percent Hispanic, 9 percent Indigenous peoples). Approximately two-thirds of the population served have incomes below the federal poverty level, and half do not have health insurance, but Ulrich said comprehensive care is provided regardless of ability to pay.

In association with its research partners in Utah, the Center for HOPE has successfully secured funding for a range of research projects focused on

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35 Frontier is defined as fewer than seven people per square mile.

36 See https://uofuhealth.utah.edu/huntsman/labs/center-for-hope (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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cancer (e.g., tobacco control, colorectal cancer screening, HPV vaccination) as well as other issues of importance to the communities, such as pandemic-focused work. Ulrich said they are now working to develop similar relationships and research partnerships in other areas of the Mountain West and have been awarded NIH funding to collaborate with community health centers in Nevada and Montana. The Center for HOPE also established the Mountain West HPV Vaccination Project, a coalition of the five states focused on improving HPV vaccination rates.

A central pillar of these community partnerships is that they are designed for sustainability, Ulrich said, leveraging health information technology (e.g., EHRs, shared population health management tools); involving community health workers, patient navigators, and health educators at partner organizations; and implementing existing evidence-based interventions.

Developing Cancer Screening and Patient Navigation Programs at Simmons Cancer Center

The Harold C. Simmons Comprehensive Cancer Center at the University of Texas (UT) Southwestern is the only NCI-Designated Cancer Center in North Texas, said Carlos Arteaga, professor of medicine and director of the Center. Located in Dallas, Simmons has satellite sites in Fort Worth and Richardson/Plano, and has two health system affiliates—Children’s Medical Center and Parkland Health and Hospital System. In Simmons’s 13-county catchment area, Arteaga said that Hispanic, Black, and Asian-American individuals account for more than half the population, and only 11 percent of residents are over the age of 65. He noted that the state of Texas has the highest rate of uninsured individuals in the country, and the region is below the Healthy People 2020 target scores for screening of breast, colorectal, and lung cancer; for HPV vaccination; and for obesity and youth smoking.

Arteaga said the cancer center is leveraging its affiliate safety net system, Parkland Hospital, to help address inequities in its catchment area. The services Parkland Hospital provides include care coordination for cancer survivors with complex care needs and population-based genetic counseling and testing at the point of mammography screening and colorectal cancer screening. Parkland also has what Arteaga said is “the largest lung cancer screening program within a safety net system” that provides low-dose CT scanning, smoking cessation services, patient navigation, and genetic counseling. He added that UT Southwestern faculty members provide care at both the safety net hospital and the academic medical center, and all patients receive the same high-quality cancer care, including access to clinical trials, patient navigation, and education.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Simmons is also working with the Cancer Prevention and Research Institute of Texas (CPRIT), which Arteaga said was created following approval by the legislature and statewide referendum, and additional state funding was approved by referendum for support from the State for cancer prevention, research, and care. Funding from CPRIT supported Simmons’s development of the Breast Screening and Patient Navigation (BSPAN) program, which Arteaga said included centralized reimbursement for local community clinicians, patient navigation, and an educational campaign. Using a hub- and-spoke delivery model, BSPAN has been expanded beyond Simmons’ catchment area in North Texas. This model has been adapted to address other cancers and to provide genetic testing and counseling via telehealth. Arteaga said there are now 9 Simmons-based outreach programs available across 118 counties in Texas, funded primarily by CPRIT. Simmons has several other programs funded by philanthropy and the UT Southwestern Health System, including programs for smoking cessation, cancer survivorship, and cancer education. Simmons nurse navigators can help patients to negotiate for sliding-scale payments for medical care, to apply for Medicaid insurance coverage, and to connect patients with charities that support families of patients being treated for cancer. Simmons also has a “cancer answer line” to answer questions about resources, cancer care, prevention, clinical trials, and survivorship, Arteaga said. In 2019, these programs supported more than 50,000 cancer screenings performed across 118 of Texas’s 254 counties, resulting in the detection of 230 precancers and 162 cancers (65 percent of which were early stage).

Improving Cancer Screening and Access to Care at Sidney Kimmel Cancer Center–Jefferson Health

The catchment area for the Sidney Kimmel Cancer Center (SKCC)–Jefferson Health includes seven densely populated and diverse counties, four in Pennsylvania and three in New Jersey, said Karen Knudsen, chief executive officer of the American Cancer Society (ACS) and former director of SKCC. This seven-county area has very high rates of cancer incidence, and mortality rates for many of the major cancer types exceed the rates for the Commonwealth of Pennsylvania, the State of New Jersey, and the nation overall. She noted that Thomas Jefferson University Hospital is the safety net hospital for the City of Philadelphia; however, SKCC serves more than 10,000 patients with cancer annually from all walks of life.

Knudsen summarized the SKCC approach as one of listening to the community, using data to drive decisions, and then establishing the necessary business practices to achieve results. She said SKCC was an early adopter of community outreach and engagement before it was a requirement for NCI-Designated Cancer Centers, embracing the concept of “integrating into the

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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community, not just connecting with the community.” To increase access to care in its catchment area, SKCC has set up a system of advanced care hubs in the community. Hubs were designed and located with input from the SKCC patient and family advisory council and community advisors. Hubs provide high-level cancer care and serve as sites for phase 2 and 3 cancer clinical trials.

To increase rates of cancer screening, SKCC built screening vans to travel to communities. The vans conduct breast tomosynthesis mammography, skin cancer screening, and prostate-specific antigen (PSA) testing, provide fecal immunochemical tests for colon cancer screening, and deliver educational information. To improve cancer screening rates and to reduce variability in cancer screening recommendations across primary care practices and clinicians, SKCC convened a group representing various perspectives to establish cancer screening guidelines specific for use across the Jefferson Health systems. The process included securing buy-in from payers, creating simplified data entry for EHRs, and incorporating these changes into the business model, Knudsen said.

Connecting to the Community to Advance the Science and Address Inequities at Mays Cancer Center

The Mays Cancer Center—involving UT Health San Antonio and MD Anderson Cancer Center—serves approximately 5 million individuals across a 38-county catchment area in South Texas, said Ruben Mesa, executive director of the Mays Cancer Center. He noted that the catchment area includes both rural and urban areas, and approximately 70 percent of the population identifies as Hispanic. Mesa said many of the residents of South Texas have not benefited from advances in cancer care; challenges that need to be overcome to achieve equity include factors such as areas of persistent poverty as well as other SDOH, individuals who have low health literacy, and access issues (e.g., lack of health insurance) related to employment or immigration status.

Mesa discussed several approaches that Mays Cancer Center is taking to address inequities in cancer care and outcomes in its catchment area. One is to improve health literacy and develop a greater understanding of cancer among Hispanic populations, including via a large, in-person meeting every 2 years in San Antonio.37

Another key approach is connecting with the community through a broad range of partnerships. Mays Cancer Center partners with primary care practices and the UT Health system’s accountable care organization to

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37 The third Advancing the Science of Cancer in Latinos meeting was scheduled for February 23 to 25, 2022. See https://www.uthscsa.edu/academics/medicine/education/cme/ascl (accessed February 11, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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strengthen the cancer care continuum, especially for cancer prevention and screening. Mays collaborates with partners on the Screen to Save38 colorectal cancer screening initiative, as well as with breast cancer screening using mammogram vans. There are partnerships with Bexar County (where San Antonio is located), such as the CareLink39 system that supports residents in accessing cancer care regardless of immigration status or insurance coverage. Mays Cancer Center partners with libraries, schools, places of worship, regional clinics, small businesses, and corporations. Another aspect of partnering with the community, Mesa said, is training community health workers in both urban and rural areas. Mesa added that cancer centers are an “important community voice at the city level, the county level, the state level, and the national level for cancer issues in our community.”

Mesa also highlighted the critical importance of training a diverse and culturally competent workforce of both clinicians and researchers who can connect with the community and understand and address their needs. Finally, he noted the need for sharing best practices and improving local, regional, and national data collection to better understand inequities and the impact of equity initiatives.

The Role of ACS in Supporting Cancer Centers

ACS is focused on patient support and advocacy, and on funding and conducting research. Knudsen, speaking from her perspective as chief executive officer of ACS, said the priorities of the organization are shaped by the priorities of the major cancer centers and the communities they serve, and many ACS activities are centered on addressing inequities in cancer care and patient outcomes. As an example, Knudsen said that ACS advocated for passage of the recent referendum in Texas to award more funding to CPRIT. Other ACS efforts include advocating for coverage of biomarker testing in lung cancer, and for Medicaid expansion. Patient support activities that help promote equity include patient navigation and assisting with care-related transportation and lodging. Ulrich noted that, through its partnership with ACS, HCI is able to help patients with transportation, accommodations at the ACS Lodge, and motorhome parking. Knudsen said ACS also has cancer education initiatives across the cancer care continuum, and she mentioned a recent education initiative with health systems in Texas to focus on the impor-

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38 See https://www.cancer.gov/about-nci/organization/crchd/inp/screen-to-save (accessed May 27, 2022).

39 See https://www.universityhealthsystem.com/es-US/patient-visitor-resources/support/carelink (accessed May 27, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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tance of HPV vaccination for cancer prevention. She said that while vaccine hesitancy was increasing generally during the COVID-19 pandemic, Texas was the only state that did not see a decline in HPV vaccination rates.

Building the Table: Community Engagement in Cancer Care and Cancer Research

Many workshop speakers expanded on the topic of patient and community engagement as a core element of meaningful community partnerships. Winn reiterated the importance of embedding community values and needs within the cancer center’s research agenda. Darien stressed that engagement involves respect for the community’s expertise and knowledge, and noted that trustworthy relationships are founded on bidirectional communication, transparency, and listening.

Ulrich pointed out that the process of partnership building is shaping the field of community-engaged dissemination and implementation research. She said key characteristics of partnerships include shared goals, mutual respect of expertise, and shared resources and data, as well as engagement activities such as patient and study advisory committees and weekly meetings with all partners (Schlecter et al., 2021). Mesa emphasized the importance of making a genuine, long-term commitment to the community and said that “potential partners clearly recognize if an institution or an investigator is . . . in it for [a] specific secondary gain or to check a box.” Arteaga discussed the need to empower communities through education about current cancer research and care and to let them know how they can engage in and inform the process. He said education is often best delivered by trusted individuals from within the community.

Arteaga noted that engaging and integrating the community also includes recruiting trainees from populations most affected by cancer health disparities. Community members are needed to work in health care delivery, cancer research, health policy, and implementation science, and as community experts in cancer health disparities. Ulrich described how she started a program that brings rural high school students to HCI to raise awareness of careers in cancer research and the health sciences, and to mentor students and their teachers in career development. In addition to increasing the diversity of the health care and research workforce, she said these students and their proud parents are ambassadors in their communities for the value of science. Mesa said the University of Texas Health Science Center at San Antonio is also working to create career pipeline opportunities for community members, including providing high school students with training experiences that could lead to a career in health care.

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Darien added that “building the table” to operationalize equity requires funding. Arteaga said there needs to be a cultural change in the business model for biomedical research. Researchers generally pursue topics of their own interest, which might not be of interest or importance to the community. He suggested that study sections start commenting on relevance to community needs and interests in grant application reviews. He observed that there has been increasing recognition of the importance of aligning research priorities with community needs among basic scientists at his institution.

Knudsen suggested leveraging the business practice of engagement scoring as a way to regularly measure a cancer center’s level of community engagement, identify gaps, and inform relationship-building efforts. “Building the table is never actually finished. It is an iterative process,” Knudsen said, because of the evolving needs of patients with cancer, their families, and their communities.

Demonstrating an Impact on Health Equity

Tucker-Seeley asked speakers to share how their center defines and measures impact as it relates to the various initiatives discussed. Arteaga said that one objective metric of the impact of cancer research and care programs is the extent to which cancer incidence and mortality are reduced in disproportionately affected communities. Another objective metric, Ulrich said, is increasing the uptake of preventive measures, such as HPV vaccination. She added that input from the HCI Community Advisory Board is also taken into account when determining the impact of programs.

Ulrich suggested that funding can also be a measure of impact, for example, by being awarded large federal grants to support and sustain partnerships with community health centers. Winn said one metric of impact should be the number of people from the community who are employed as a result of cancer center grant funding.

Mesa said programs that can have the greatest impact on cancer outcomes are upstream efforts to improve cancer prevention and screening. Mays Cancer Center, for example, is partnering with a children’s cancer research institute to identify conditions or factors in childhood that are associated with increased rates of cancer in adulthood, such as childhood obesity or lack of HPV vaccination.

Increasing the enrollment of diverse populations in cancer clinical trials could be another metric. Mesa said many patients who are interested in or potentially eligible for participation in a cancer clinical trial are not enrolled due to a range of challenges, including financial barriers (e.g., transportation expenses, childcare needs, or lost wages from time off for cancer care) and eligibility criteria that perpetuate the exclusion of underrepresented populations due to factors associated with SDOH (e.g., comorbidities). Winn added that

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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making an impact requires clinical trialists who effectively engage and communicate with at-risk and underserved communities.

Along similar lines, Knudsen suggested that another metric of impact is the extent to which oncology social workers on the care team have been able to identify the gaps in the cancer care continuum and address the issues that may prevent patients from receiving their cancer care.

Winn discussed the need to look beyond the direct impact of interventions to the relevance of the policies in place. For example, he said that addressing a patient’s transportation needs is more complex than simply providing transportation vouchers, or implementing telehealth capabilities, especially if these patients live in rural areas that have limited phone and Internet service. In this regard, Winn emphasized the need for the cancer care community to be advocates for expanded broadband Internet access across the United States.

Ulrich said the impact of some important initiatives can be difficult to measure, such as the type of community workforce training and mentoring programs that she, Arteaga, and Mesa discussed. While it is possible to measure, for example, the number of mentored students who continue to study science in college or who obtain internships at prestigious research institutions, Ulrich said there are important intangible benefits, such as the role of these students as ambassadors to the community for the value of science.

The Role of Leadership

A number of speakers discussed the essential role of organizational leadership to incorporate equity as a core institutional value. Mesa said when equity is an institutional priority, it permeates the organization and is embedded in every decision. Approaching cancer care with a health equity lens means considering patient needs, such as child care during treatments, transportation to appointments, parking, food insecurity, and survivorship care.

Winn discussed the creation of new leadership roles at his institution, including an associate director of community outreach and engagement and positions focused on diversity, equity, and inclusion. He also emphasized the need for the institutional workforce and leadership to reflect the community. Knudsen said ACS recently created the role of chief diversity officer, and she encouraged organizations to clearly codify the equity mission in job descriptions. For example, the job description for the ACS chief diversity officer states that the officer “will partner with the head of research for decisions associated with research, funding, and allocation [and] will partner with the head of advocacy for decisions and prioritization of strategies for advocacy.” She also recommended that organizations empower and involve diversity officers in institutional decision making, and use project management tools, such

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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as RACI charts,40 to clearly specify roles and responsibilities in institutional projects. Ulrich agreed with the importance of formalizing equity as a priority and said equity, diversity, and inclusion are core pillars of the HCI strategic plan. Their office of equity, diversity, and inclusion has recently been expanded and is now following up on a 64-recommendation plan.

REFLECTIONS

In closing the workshop, Darien and Tucker-Seeley shared their reflections on some of the key areas of discussion.

The workshop opened with a thoughtful and direct discussion of structural racism as a root cause of health inequities, including cancer disparities. Darien and Tucker-Seeley said that it is essential to acknowledge history truthfully in order to fully realize health equity. Trust (and the lack of trustworthiness) was a theme across all the discussions. Speakers discussed the importance of acknowledgment and justice as means for communities to address historical trauma, and the need for institutions to be trustworthy. The process of establishing mutual trust requires bidirectional communication, Darien stressed.

Tucker-Seeley said organizations need to be clear about their definitions of health disparities and health equity, and also need to be explicit about how disparities are being measured, how disparities will be addressed, and what constitutes success for equity initiatives.

Darien said that a key goal of the workshop was to identify opportunities for action. Many workshop speakers shared ideas about how to operationalize equity. Several speakers discussed the need for political will and support from organizational leadership, and Tucker-Seeley reflected on the examples speakers shared of how academic cancer centers are making an impact on equity within their catchment areas. Additional discussion focused on the role of partnerships and convening all collaborators as equal partners for meaningful engagement. The need to design community interventions for sustainability was also emphasized, Darien said, and speakers shared examples of long-term, productive partnerships with communities in cancer care and cancer research.

The point was made that “patients need help now,” Tucker Seeley said, and work to dismantle structural racism and overcome health inequities broadly needs to be undertaken concurrently with efforts to meet patients’ immediate social and health care needs. Darien added that the focus also needs to shift away from the choices people make and toward the choices that people

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40 RACI charts are project management tools that help clarify roles and responsibilities throughout a project. See https://www.forbes.com/advisor/business/raci-chart (accessed June 8, 2022).

Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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have available to them; that is, to understand the impact of SDOH on cancer prevention, care, and patient outcomes.

“We all recognize that integrating social care and equity into the cancer care delivery system is hard, but we work on hard things every day as we work to treat and cure cancer,” Tucker-Seeley said. He said he is confident that progress can be made toward reducing disparities in cancer care. Darien and Tucker-Seeley urged participants to continue these discussions and work to operationalize equity in their own work and within their institutions.

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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Suggested Citation:"Proceedings of a Workshop." National Academies of Sciences, Engineering, and Medicine. 2022. Promoting Health Equity in Cancer Care: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/26661.
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Next: Appendix A: Statement of Task »
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Despite advances in the delivery of high-quality cancer care and improvements in patient outcomes in recent years, disparities in cancer incidence, care, and patient outcomes persist. To examine opportunities to improve health equity across the cancer care continuum, the National Cancer Policy Forum and the Roundtable on the Promotion of Health Equity hosted a public workshop, Promoting Health Equity in Cancer Care, on October 25 and October 26, 2021.

This virtual workshop featured presentations and panel discussions on topics that included: opportunities to improve equitable access to affordable, high-quality cancer care; strategies to identify and address the intersectionality of structural racism and implicit bias in cancer care delivery; the potential for quality measurement and payment mechanisms to incentivize health equity in cancer care delivery; and clinical practice data collection efforts to better assess and care for people living with and beyond cancer. This publication summarizes the presentation and discussion of the workshop.

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