Identifying and Dismantling Racist Narratives to Promote Health Equity

In 2018, Olympic gold medalist Serena Williams shared with the world that she nearly died from a pulmonic embolism after delivering her daughter. Many were surprised to learn that Williams had pleaded with nurses to take her symptoms seriously. Despite Williams’ difficulty breathing, history of blood clots, and emergency Cesarean section, health care providers initially dismissed her concerns as confusion caused by her pain medication.¹ How could a well-respected, world-class athlete have been so quickly dismissed?

Too often, racist narratives (defined here as patterns in stories that perpetuate racial discrimination, reinforce negative, biased views about patients of color, and shape policy and individual decisions) contribute to devastating disparities in health. Black women in the United States are still three times more likely to die from a pregnancy-related cause than White women. More than 80% of these deaths are preventable.² Though Williams eventually convinced doctors to perform a CT scan that saved her life,³ her story is just one example of the pervasiveness of racist narratives in society and their potentially deadly outcomes.

Narratives are the themes and ideas permeating collections of stories.⁴ Here we use the term health narratives to reference the ideas commonly held by people and institutions and contain prevailing beliefs that shape our understanding about health, illness, and health care. These narratives can be powerful tools that influence public perception, shape policy decisions, and impact individuals’ behaviors and choices related to their health – including seeking health care. For example, the widespread personal responsibility narrative posits that individuals are personally responsible for making healthy choices to promote their well-being.^5,6,7,8 This narrative suggests that individuals have control over their health through choices about diet, physical activity, smoking, and alcohol consumption. This story blames individuals for obesity, diabetes, and other health conditions and also diverts attention from the many structural factors influencing health including housing conditions, targeted marketing, residential segregation, and unequal access to nutritious foods, walkable spaces, and quality health care. Social determinants of health offer an alternative framework recognizing that health is influenced by broad social, economic, and environmental factors such as income inequality, systemic discrimination, and unequal access to education, housing, health care, and air and water.^9,10,11 However, narratives about the social determinants of health are less common and not widely understood.

Health narratives are part of meta narratives – overarching, all-encompassing stories that aim to provide a comprehensive understanding of the world and the way it works.⁴ These deep narratives often serve as dominant or widely accepted frameworks that shape people’s beliefs, values, and understanding of reality. The “American Dream” is an example of a meta narrative telling us that, if we work hard enough, we can accomplish anything. In turn, this pervasive story  shapes societal and individual beliefs about how and why racial disparities in areas like health and wealth occur. Narratives about personal health responsibility and the American Dream downplay or omit the structural factors that perpetuate racial health disparities. This leads to victim-blaming and reinforces racial stereotyping and biases. For example, a study of 287 physician residents found that they implicitly favored White patients and were influenced by stereotypes of Black patients as less cooperative with medical procedures.¹²

The “biology” of race is another meta narrative contributing to health inequities with deep-seated roots in scientific racism. Over the last twenty years, genetic research has devoted significant resources to discovering links between “race” (a social construct that varies in definition and measurement across time and place)¹³ and disease risk. The complexity of this research is often simplified by popular media in a way that promotes deterministic views that overshadow the history and legacy of structural racism and highlight genetic predisposition to disease as a key factor in health inequity.¹⁴ For example, individuals who attribute the higher rates of hypertension and diabetes among Black, Latine, and Indigenous populations to “biological” risk factors overlook the crucial social and structural determinants of health.^15,16 Such narratives pervade health care at the institutional, interpersonal, and internalized levels. A 2016 survey of 222 White medical students and residents found that half believed at least one myth about physiological differences between Black and White people, and those who endorsed false beliefs were less likely to recommend appropriate treatment to Black patients.¹⁷ Several studies examining racial disparities in pain management have found that Black and Hispanic patients consistently receive inadequate pain management care compared to White patients.^18,19

Exposure to racist narratives in medical training still exists and can negatively impact how physicians view and interact with patients. One study found that medical students exposed to instructors making negative or disparaging remarks about Black patients were significantly more likely to express racial bias themselves.²⁰ A 2021 study found that more than half of the 7,262 Black and Hispanic American respondents reported experiencing at least one negative health care experience in their lives.^21,22 Racist narratives harm health care providers too – a survey of 71 physicians of color found that 23% had a patient refuse their care due to the physician’s race or ethnicity.²³

Identifying and dismantling racist narratives across sectors is vital to the collective effort to advance health equity in the United States and globally. Health equity and racial justice experts have known for decades that structural racism – the interconnected societal structures, policies, practices, and beliefs that systemically disadvantage certain raical and ethnic groups wihile advantaging others across areas such as health care, education, employment housing, and more – plays a significant role in health outcomes.²⁴ Empirical research demonstrates the adverse health effects arising from structural racism, including reduced life expectancy and higher rates of chronic and infectious diseases among people of color compared to White peers.²⁵ Yet, despite increasing scientific consensus that structural racism significantly contributes to negative health outcomes, misrepresentation and dismissal of the root causes of these disparities remain pervasive to the extent that nearly sixty percent of Americans do not believe that structural racism influences health.²⁶

Actively changing racist narratives is crucial to shifting mindsets and formulating new strategies for building racial health equity. Narrative change is a relatively young field of practice with roots in social change movements. Its goal is to change culture and policy by strategically shifting patterns in the stories we tell.^27,28 Led primarily by activists with expertise in strategic communications, academic research, and advocacy, narrative change combines research translation, storytelling, media campaigns, and other communications efforts to reframe deeply ingrained beliefs. Practitioners use a variety of research methodologies including interviews, surveys, observations, and usability trials to investigate narratives. This data then informs how communication strategists craft new messages to promote narrative change.²⁹ This work is multidisciplinary, time-consuming, and requires repetition and accumulation of new language and syntax, as new narratives are replaced old ones.

Audiences need to hear new narratives repeatedly, in many formats, and from many sources, to accept and internalize them. This process of creation and repetition operates in a range of platforms ranging from journalism and mass culture to popular culture, social media, and the arts. For example, the federal legalization of same-sex marriage in 2015 was preceded by a lengthy process of narrative change work that started in the 1960s. Public discussions gradually shifted away from vilifying LGBTQ+ people toward acceptance, and lead to changes in state law and growing widespread support for federal recognition of same-sex unions.^30,31

The practice of referring to “undocumented immigrants” instead of “illegal immigrants” is the result of a narrative change campaign “Drop the I-Word” launched in 2010 by Race Forward.³² This campaign sought to change the narrative by rejecting the notion that a person could be illegal and providing an alternative frame that focuses instead on immigration status. When the Associated Press Style Guide started using “undocumented immigrant” in 2013, many media outlets followed.  Similarly, the use of person-centered language has gradually replaced reductive or pejoritive terminology  like “AIDS patient” and “addict” with “person living with HIV” and “people with a substance-use disorder.”  This linguistic advocacy started with the disability community in 1974 and has since been adopted by health professionals and civil rights activists  working to reduce discrimination against people currently and formerly incarcerated.³³ Each of these examples is, at times, contested, and all are still evolving, but together they reflect the widespread influence of narrative change work.

Moving forward, several narrative change efforts can serve as models for dismantling racist health narratives. Health equity research has a decades-long history, dating back at least to the 1960s. This research tended to focus on measuring differences in health and wellbeing between groups based on race, socio-economic status, education, and other characteristics. Since then, the focus on disparities has shifted to a more complex and expansive emphasis on the policies, social and economic forces, interpersonal interactions, and physical realities of our daily lives.^34,35 For example, the Robert Wood Johnson Foundation’s early focus on “healthy communities,” broadened in 2010 into “A New Way to Talk About the Social Determinants of Health.”³⁶ This narrative shift explicitly acknowledges that structural racism drives both individual and community health. More recently, this evolution is exemplified by the combined efforts of health professionals, policymakers, and the media to focus national attention on disproportionately high maternal mortality among Black women.^37,38 By disseminating empirical research while elevating stories of everyday Black women as well as celebrities such as Serena Williams, these narrative change efforts encourage real financial investments³⁹ in promoting equity and changing policy.

Narrative change can be a powerful tool – one of many needed — to advance health equity. Translating research into intentional stories that engage a broad audience can reframe how health care practitioners, policymakers, and individuals understand health equity and engage in action. The Child Opportunity Index, for example, provides empirical evidence of racial disparities that deprive children of their ability to thrive and explicitly engages with the myth that opportunity should be distributed equitably.⁴⁰ The project invests in translating its data into engaging and easy-to-understand visualizations, including interactive maps that reveal stark racial and ethnic inequities between neighborhoods just a mile or two apart.

Our reality is defined by the narratives we have been hearing all our lives. The stories we tell ourselves and the yarns we spin about the lives of others have great power. They connect the different pieces of our history and identities and can whisper privileged secrets that set some up for success while restricting others with immobilizing knots that are difficult to see and even harder to untie. However, we can untangle and cut through harmful narratives, change the pattern, and weave in new strands.

To succeed, this work requires multilevel, collective effort and engagement.  Health professionals need to be inclusive in hearing, believing, addressing, and centering patients’ experiences and concerns. Health researchers and health care organizations can partner with communities to better understand their needs and priorities through community-engaged and community co-designed research on health priorities and inequities. Policymakers can pass legislation by investing in health equity research and intervention initiatives, as the U.S. Department of Health Resources and Services Administration recently did by promising to invest $90 million to address maternal health disparities.³⁹ Whether through patient-centered care, community-engaged health equity research, narrative change campaigns, or stories featured in popular press, the goal is to prevent stories like Serena Williams’s from needing to be told again.