Heart of America Annual Survey: A Call for Unity and the Power of Racial Healing

Abstract

Preface: Bending the Arc Toward Health Equity and Justice by Gail C. Christopher Those in the field of social justice and health equity advocacy say, as popularized by Dr. Martin Luther King Jr., ?the arc of the moral universe is long, but it bends toward justice.? After decades of work in the field of health equity, the arc is clearly bending, but slowly. Racial inequities remain a feature of the U.S. health care landscape 20 years after the former Institute of Medicine (now the National Academy of Medicine) published the landmark report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.1 This breakthrough publication unequivocally documented widespread racial and ethnic inequities in the quality of health care, even after accounting for access-related factors such as health insurance coverage, and yet, inequities persist. Therefore, it was not surprising that recent findings by the Kaiser Family Foundation (KFF) demonstrated that the experiences of people of color within the medical system were characterized by discrimination and perceived negative encounters. KFF conducted a nationally representative survey based on responses from over 6000 adults, providing new data on individuals' experiences with racism and discrimination and the impacts of these experiences, both broadly and within racial and ethnic groups. The good news is that the survey tapped into the voices of the populations directly affected by racial hierarchy that persists within the nation's health care delivery system. Findings that reflect the need to address continued discrimination and racism within the health care system include the following: Negative experiences with health care providers as well as language access challenges have consequences for health and health care use. Among adults who used health care in the past 3 years, one in four (25%) say they had a negative experience (including being treated unfairly or with disrespect, a negative provider interaction, or difficulty with language access), and it led to worse health, being less likely to seek care, and/or switching providers. American Indians and Alaska Natives (AIAN) and Black adults are more likely than White adults to say they had a negative experience, and it contributed to at least one of these consequences. Having providers with a shared background matters, as Black, Hispanic, and Asian adults who have more health care visits with providers who share their racial and ethnic background report more frequent positive and respectful interactions. Reflecting on the limited racial and ethnic diversity of the health care workforce, most Hispanic, Black, Asian, and AIAN adults say that fewer than half of their health care visits in the past 3 years were with a providers who shared their racial or ethnic background. However, the survey shows how provider racial and ethnic concordance can make a difference in patient interactions. For example, Black adults who had at least half of recent visits with a provider who shares their background are more likely than those who have fewer of these visits to say that their doctor explained things in a way they could understand (90% vs. 85%), involved them in decision-making about their care (84% vs. 73%), understood and respected their cultural values or beliefs (84% vs. 76%), or asked them about social and economic factors (39% vs. 24%) during recent visits.2 The persistence of the reported discrimination and negative encounters by people of color could be partially contributed to the lack of diversity in our health care workforce. The National Institute of Health published a study in 2019 documenting the racial/ethnic diversity of the current health care workforce and the graduate pipeline for 10 health care professions comprising a total of 148,358,252 individuals aged 20 to 65 years old who were working or searching for work and a total of 71,608,009 individuals aged 20 to 35 years old in the educational pipeline. Among the 10 professions assessed, the mean diversity index for Black people was 0.54 in the current workforce and in the educational pipeline. In 5 of 10 health care professions, representation of Black graduates was lower than representation in the current workforce (e.g., occupational therapy: 0.31 vs. 0.50). The mean diversity index for Hispanic people was 0.34 in the current workforce; it improved to 0.48 in the educational pipeline but remained lower than 0.50 in 6 of 10 professions, including physical therapy (0.33). The mean diversity index for Native American people was 0.54 in the current workforce and increased to 0.57 in the educational pipeline.3 Clearly, there is a need for comprehensive strategies to compensate for the lack of diversity, while at the same time there is an urgent need to increase diversity in our workforce. Innovative interventions in our health care workforce are required. As America seeks to bring equity to communities and advance social justice, it is vital that health care, public health policy, advocacy, and budgeting decisions focus on racial equity and healing. For too long, racism has been the root cause of health disparities and inequities that have ravaged populations of color. The work of eliminating health care disparities requires a realistic understanding of the historic and contemporary factors that contribute to health care inequities. As recently as 1965, Black patients in some states could only receive care in separate and poorly funded medical facilities, where Black physicians were relegated to practice. When President Lyndon B. Johnson signed Medicare into law, more than 7000 U.S. hospitals instantly became subject to the civil rights regulations set in Title VI. These hospitals could no longer discriminate and receive federal payments for medical services. But the decades before that were periods of protracted defiance and resistance to racial and ethnic integration.4 This dramatic change in 1965 was fully a hundred years after the end of the civil war. That war ended more than two centuries of denial of the humanity of millions of enslaved African Americans. The permission to enslave and to deny full human and civil rights was rooted in a cultural belief in a false hierarchy of human value. This belief was certainly embedded in medical and health care practices for centuries creating a health care system that was ill equipped to address the increased vulnerability to illness precipitated by myriad social factors known today as the social determinants of health. Systemic racism and unconscious bias continue to contribute to poor health outcomes for populations of color, with far too much suffering by individuals and their families, as infants die prematurely, chronic and infectious diseases ravage communities, and many lack health insurance. The National Collaborative for Health Equity (NCHE) has worked during the last 20 years to identify and amplify solutions to this seemingly intractable problem of health inequities for people of color. It is vital to highlight some of the innovative strategies and research efforts that are happening around the country, which can be a source for inspiration and hope. Heart disease remains the leading killer and crippler in America.5 Cardiovascular disease disproportionately burdens communities of colors as well. Working with other physicians at Brigham and Women's Hospital in Boston, Dr. Michelle E. Morse spearheaded a study determining that Black and Hispanic heart failure patients treated in the hospital's emergency department were disproportionately sent to general admissions rather than the specialty cardiology unit where there are better patient outcomes.6 In response, her leadership led to the creation of the Healing ARC intervention and framework, a blueprint for race-conscious interventions that can eliminate racism in patient care. To achieve this, they have developed a computerized clinical decision support system (CDSS) to address a racial health inequity. This race-conscious CDSS, which will be evaluated prospectively for impact, is designed to address two antiracism goals simultaneously: clinician education through acknowledgment of the racial inequity and redress for Black and Latinx patients.7 This creative intervention helps to mitigate the risk of discriminatory treatment in the clinical setting by leveraging technology to reduce the risk of human error. There is an increasing awareness of the need for effective interventions, which is demonstrated by the growing number of local jurisdictions that have declared racism to be a public health crisis or emergency, which is over 250 as of this writing.8 These local efforts were accompanied by a courageous statement in 2021 by the then-new Director of the Centers for Disease Control and Prevention, Dr. Rochelle Walensky. ?Racism is a serious public health threat that directly affects the well-being of millions of Americans. As a result, it affects the health of our entire nation.?9 This nation, despite its racialized history and formation, has yet to follow the lead of over 40 other countries in the world and implement a national Truth and Reconciliation Commission (TRC) effort. However, there has been leadership by the philanthropic sector to create and support local truth efforts. W. K. Kellogg Foundation (WKKF) launched the Truth, Racial Healing, and Transformation? (TRHT) effort in 2016 in funding partnership with several family, local, and regional philanthropic entities. TRHT, while informed by the TRC model, is a unique process designed to reflect, embrace, and address the unprecedented diversity and unparalleled racialized history of the United States. With funding from the Robert Wood Johnson Foundation (RWJF), WKKF, and de Beaumont Foundation, NCHE works with leaders across the country that are committed to improving health outcomes for communities of color by adapting the comprehensive TRHT framework to their ongoing efforts to achieve health equity. The TRHT framework includes five pillars or areas of focus; these include narrative change, racial healing and relationship building, separation, law, and economy. In 2021, in partnership with the American Public Health Association (APHA) and de Beaumont Foundation, NCHE curated briefs that documented policies and practices being implemented across the country to address racism and related social determinants of health and well-being. This set of briefs, Healing through Policy, can be accessed through NCHE, APHA, and de Beaumont's websites. As the landmark study, Unequal Treatment, the Healing Arc cardiovascular innovation (cited above), and the KFF research indicate that accurate data are required before effective interventions can be designed and implemented. At NCHE, we believe that data have to go beyond stating disparities and move toward shifting a narrative to create expectations of accountability for measurable progress. Brian Smedley, PhD, chief editor of Unequal Treatment and senior fellow at the Urban Institute, worked with leading health scholars and researchers to design the Health Opportunity and Equity (HOPE) Initiative, with funding from RWJF. The HOPE Data Initiative tracks 27 indicators of child and adult health outcomes and the key resources that produce opportunities for health and well-being. What makes the HOPE Data Initiative unique is the ?distance to goal? concept or the concept of focusing on the opportunity to achieve health equity. State and/or population groups can use the HOPE Indicators as a tool to identify equity gaps, set equity goals, measure distance-to-goal, and drive equity action. With funding from the John D. and Catherine T. MacArthur Foundation and RWJF, NCHE is working with local jurisdictions in adapting the HOPE national- and state-level indicators to support their local priorities and interventions. This community of practice, Leveraging HOPE to Transform Public Health Data Systems, currently includes representatives of 22 local jurisdictions. Despite meaningful efforts over the last four decades, the diversity of the health care workforce in the United States is abysmal. As the general population becomes more diverse, this divide is even more consequential, as the KFF survey results indicate. KFF results also emphasize the importance of doctor?patient concordance. One recent study dramatically illustrates the importance of this as it relates to what is perhaps our nation's most persistent disparity?infant mortality. In the United States, Black newborns die at three times the rate of White newborns. Research examining 1.8 million hospital births in the state of Florida between 1992 and 2015 suggest that newborn?physician racial concordance is associated with a significant improvement in mortality for Black infants. A large body of work highlights disparities in survival rates across Black and White newborns during childbirth. The researchers posit that these differences may be ameliorated by racial concordance between the physician and newborn patient. Findings suggest that when Black newborns are cared for by Black physicians, the mortality penalty they suffer, as compared with White infants, is halved. Strikingly, these effects appear to manifest more strongly in more complicated cases and when hospitals deliver more Black newborns.10 This study is a powerful example of how data can be used to delve into and deepen our understanding of the scale and scope of the problem and foster more tailored interventions such as the type described by the physicians at Brigham and Women's Hospital. The stark racial disparities in incidents and mortalities in COVID-19 lead RWJF to create a first of its kind National Commission to Transform Public Health Data Systems in the United States. NCHE partnered in this endeavor and facilitated the adaptation of the TRHT strategy for the commission's deliberations. As a result, the recommendations are organized around three key themes: (1) center health equity and well-being in narrative change, (2) prioritize equitable governance and community engagement, (3) ensure public health measurement captures and addresses structural racism and other inequities. With continued support from RWJF, the commission's recommendations are influencing federal policy, public health organizations, and jurisdictions across the nation. Additional encouragement comes from the fact that leading health and medical organizations have moved beyond denial of the problem and have begun the hard work of acknowledging how they have contributed to the problem and are beginning to take meaningful, corrective action. Examples include In June 2021, the American Medical Association's House of Delegates, representing their peers from all corners of medicine, voted to adopt guidelines addressing systemic racism in medicine, including discrimination, bias, and abuse, including expressions of prejudice known as microaggressions. AMA recommended that health care organizations and systems use new guidelines to establish institutional policies that promote positive cultural change and ensure a safe, discrimination-free work environment.11 In October 2021, the American Psychological Association's Council of Representatives adopted a resolution because of their role in promoting, perpetuating, and failing to challenge racism, racial discrimination, and human hierarchy in the U.S. Recognizing that many existing historical records and narratives have been centered in Whiteness, APA also concluded that it was imperative to capture oral history and the lived experiences of communities of color, so they commissioned a series of listening sessions and surveys, which also informed their resolution.12 In June 2020, the American Psychiatric Association Presidential Task Force to Address Structural Racism Throughout Psychiatry (TFSR) was formed by APA President, Dr. Jeffrey Geller. The APA Board of Trustees' Structural Racism Accountability Committee (SRAC) was formed in 2021 to ensure that the recommendations of the 2020?2021 TFSR were carried out. This resulted in 18 recommendations that were approved by the SRAC.13 As the diversity of our child and youth populations increases, it is also very promising that the American Academy of Pediatrics (AAP) is taking steps to address the issue of racism and racial discrimination. In 2019, AAP issued a policy statement that provided an evidence-based document focused on the role of racism in child and adolescent development and health outcomes. The intention of this policy statement was to better equip pediatricians to proactively engage in strategies to optimize clinical care, workforce development, professional education, systems engagement, and research in a manner designed to reduce the health effects of structural, personally mediated, and internalized racism and improve the health and well-being of all children, adolescents, emerging adults, and their families.14 Achieving the goals of overcoming the legacy of racism and providing opportunities for health and well-being for historically marginalized communities requires accelerated efforts. In a comprehensive way, the KFF research is extremely valuable because it gives the perspective of diverse populations and their lived experiences interacting with the health care delivery system. As Dr. Martin Luther King Jr. admonished us, ?Of all forms of discrimination and inequalities, injustice in health is the most shocking and inhuman.? Today, NCHE is proud to present five distinguished leaders in various disciplines important to achieving racial and health equity. This special roundtable event with Health Equity, a peer-reviewed journal that is NCHE's official publication partner, is leveraging the insights gleaned from NCHE's first Heart of America Annual Survey. This survey explores our nation's readiness for overcoming our divisions and healing from our racialized past. We are also pleased to announce the following five new briefs, background papers related to racial and health equity: 21st Century Narrative Change with Focus on Social Media, written by Amy Sprecher and Aaliytha Stevens, Cofounders: Building CommUnity LLC (Supplementary Data S1) Facilitating Social Transformation Through Self and Collective Healing: A Collection of Insights, Resources, and Practices, written by Colette Rausch, Director, Neuroscience and Peacebuilding, Think Peace; and Laura Webber, Convener, Think Peace Learning and Support Hub (Supplementary Data S2) Toward Transformative Reparations, written by Rob Corcoran, Program Design & Training Consultant, Initiatives of Change International; and Mike Wenger, Senior Fellow, American Association of Colleges and Universities (AAC&U) (Supplementary Data S3) Segregation Yesterday and Today: Exploring Possibilities for Systemic Change, written by Susan Eaton, Professor of Practice and Director, The Sillerman Center, The Heller School for Social Policy and Management at Brandeis University (Supplementary Data S4) The Economic Well-being of Black Americans and the Implications for Health Equity written by Darrell J. Gaskins, PhD, MS, William C. and Nancy F. Richardson Professor in Health Policy and Director, Hopkins Center for Health Disparities Solutions, Department of Health Policy and Management, Johns Hopkins School of Management and Public Health (Supplementary Data S5) The perspectives shared in the following roundtable discussion in the Health Equity journal, as well as the knowledge shared in the background papers listed above, should be of interest and value to executives, leaders, and educators in all sectors across the country. The insights shared by roundtable participants demonstrate that progress can be made in facing and overcoming our nation's historic and contemporary divisions. Their contributions and the results of NCHE's annual survey remind us that our democracy can be strengthened by increasing our individual and collective ability to see ourselves through a lens of shared humanity. We encourage you to read and share this publication.