Promoting Health Equity in Cancer Care Proceedings of a Workshop (2022) / Chapter Skim
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Proceedings of a Workshop
Proceedings of a Workshop
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. 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.
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• "Health equity is achieved when every person has the opportunity to ‘attain his or her full health potential' and no one is ‘disadvantaged from achieving this potential because of social position or other socially determined circumstances.'"b (Tucker-Seeley) • "Health equity means that everyone has a fair and just opportunity to be as healthy as possible.
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• "Structural racism involves history, culture, institutions, policies, and codified practices that perpetuate inequity by promoting an ideology of inferiority" (Pérez-Stable and Hooper, 2021)
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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.
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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.
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Equitable Cancer Care Delivery Systems • Restructuring the U.S. health care financing and delivery system is necessary to prioritize health equity in cancer care.
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• Team-based cancer care -- collaboration among physicians, nurses, patient navigators, care coordinators, community health workers, community health aides/practitioners, social workers, behavioral health workers, and others -- facilitates the delivery of equitable cancer care. (Cueva, Hughes, Mullett, Wenzel)
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Restructuring the Health Care Financing and Delivery System for Health Equity • Establish clear organizational definitions of health disparities and health equity. (Tucker-Seeley)
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(Arteaga, Baskin, Mesa, Moy, Pérez-Stable) • Restructure education and training among health care professionals and researchers to embed health equity as an explicit component of training.
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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
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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, 6 See https://www.healthaffairs.org/do/10.1377/hblog20190115.234942/full (accessed February 11, 2022)
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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)
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GHDC then partners with academic institutions and health care systems to study racial and ethnic health disparities and develop strategies to eliminate them. McCarter described two GHDC initiatives.
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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.
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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.
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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)
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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?
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, 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, .
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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
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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 11 See https://www.cdc.gov/tuskegee/timeline.htm (accessed May 23, 2022)
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. 16 The CMS Health Equity Technical Assistance Program can be reached at HealthEquity TA@cms.hhs.gov.
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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 AfricanAmericans (ECANA) .17 However, Doll said physicians are "operating in a soci 17 See https://ecanawomen.org (accessed May 23, 2022)
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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.
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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,
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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.
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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.
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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.
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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.
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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)
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. SOURCES: Baskin presentation, October 25, 2021, using data from State Cancer Profiles, http://statecancerprofiles.cancer.gov (accessed February 11, 2022)
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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.
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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.
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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)
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, 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)
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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)
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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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• 2002: The first Centers for Population Health and Health Disparities Program Request for Applications was issued to support the conduct of research on health inequities and the training of researchers in this area. • 2015–2020: Division of Cancer Control doubled funding for health disparities and health equity research.
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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.
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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)
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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.
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. 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.
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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)
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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.
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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)
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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.
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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.
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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.
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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.
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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.
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. Improving Cancer Screening and Access to Care at Sidney Kimmel Cancer Center–Jefferson Health The catchment area for the Sidney Kimmel Cancer Center (SKCC)
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Mays Cancer Center partners with primary care practices and the UT Health system's accountable care organization to 37 The third Advancing the Science of Cancer in Latinos meeting was scheduled for Feb ruary 23 to 25, 2022. See https://www.uthscsa.edu/academics/medicine/education/cme/ascl (accessed February 11, 2022)
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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.
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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.
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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.
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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.
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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.
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2021. The master's tools will never dismantle the master's house: Ten critical lessons for Black and other health equity researchers of color.
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2020. Structural racism, social risk factors, and COVID-19 -- a dangerous convergence for Black Americans.
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2020. Cancer disparities and health equity: A policy statement from the American Society of Clinical Oncology.
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2021. Application of community-engaged dissemination and implementation science to improve health equity.
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