Black Health and Data Expertise: Building Trust in Untrustworthy Data
My new project explores how Black health experts develop and deploy trust in their efforts to solve health disparities.
While researchers have explored why Black communities mistrust the healthcare system, there has been far less attention paid to the data that inform healthcare decisions about these communities, and whether it is worthy of trust. Like trust in healthcare systems, trust in numerical data is contingent upon the social practices — things like clinical encounters — that produce them. The socio-cultural context that produces information about race and health, including social determinants of health, is particularly fraught and under-analyzed.
The Harms of Racialized Health Data
In the United States, the social practices that produce racialized health data are connected to the legacy of slavery and the statistical methods used to document and reinforce its violence. Tracing the history of the transatlantic slave trade, Saidiya Hartman argues that, while rooted in slavery, a “racial calculus,” captured in the metrics that document “skewed life chances, limited access to health and education, premature death, incarceration, and impoverishment,” continues to this day. Building upon Hartman’s formulation, Katherine McKittrick asserts that archival data collected about enslaved people “puts pressure on our present system of knowledge by affirming the knowable (Black objecthood) and disguising the untold (Black human being).”
I use the term “racialized” to emphasize the active imposition of racial categories on health information and combat the notion that race is a biological determinant of health. Race is not an inherent or biological risk factor for health disparities, and data that seeks to prove that race alone is a causal factor of poor health amounts to scientific racism. To examine and explain why people of color face worse health outcomes than white people, rigid racial categories are often used as a stand-in for complex social experiences while structural forces like racism evade measurement. For example, “social determinants of health,” a term commonly used to describe the social conditions that shape health outcomes, implies that these conditions are measurable — in reality, people and their contexts are complex, and “determinants” do not always predict behavior. While government agencies and public health experts use this data to highlight where inequities exist and disseminate resources to ameliorate them, these interventions also pathologize marginalized communities and reproduce harmful stereotypes.
Healthcare experts’ growing reliance on racialized health data to address health disparities is the latest development in a centuries-long battle over the allocation of power and resources that has had a significant impact on Black communities’ confidence in healthcare institutions. Often cited as the reason for Black communities’ distrust in medicine, the Tuskeegee Syphillis experiment is one of a litany of abuses perpetrated by United States healthcare institutions, past and present. In addition to coerced or forced participation in biomedical research, racist public health policies and campaigns, unequal allocation of wealth and material resources, and racism on the part of healthcare workers all actively deteriorate Black communities’ health outcomes and discourage confidence in the healthcare system.
Centering Black Agency
Critiquing the premise of Black mistrust in healthcare, Yolanda Wilson argues that centering mistrust often presupposes Black inferiority, contributing to a perennial pathologizing of Black people and putting the onus of repairing trust onto Black communities. Rather than asking why Black people don’t trust healthcare institutions, Wilson offers a reframing: Given historical and contemporary abuses, seeking answers about vaccines, treatments, participation in medical research, and other points of contact with the healthcare system is not only justifiable, but an act of survival. What is often interpreted as evidence of ignorance or mistrust might be more accurately understood as tacit knowledge being used in the service of self-care, transforming the question of trust in healthcare systems into an assertion of agency.
Like mistrust in its healthcare systems, mistrust in US healthcare data is complicated by a positivist culture that believes metrics about race are a necessary tool for illuminating and addressing disparities. Quantitative data holds a unique position of authority in our present system of knowledge — the idea that “numbers don’t lie” places metrics about race and health in a privileged class of information. During the early months of the COVID-19 pandemic, for example, a paucity of data defined efforts to address racialized health inequalities. Physicians, politicians, and pundits called for an increase in the collection, reporting, and analysis of metrics about race and COVID-19. They argued that without racial data, experts would be unable to identify disparities and disseminate critical resources. Yet once the data became available, it confirmed what many experts already knew before the pandemic: Black people in the United States were dying in disproportionate numbers, and in ways that were patently preventable. Black Americans were already aware of this fact, and rather than waiting for data to verify their lived experiences, Black-led grassroots initiatives sprung up across the country to combat the spread of COVID-19.
Scholars like Alondra Nelson, Ruha Benjamin, and Dorothy Roberts have explored how Black activists, communities, and experts have mobilized for decades to improve Black health outcomes. Today, groups like the Black Doctors’ COVID-19 Consortium are continuing this work by providing testing, vaccination, and other health resources for community members who cannot or prefer not to receive healthcare in traditional settings. These stories of Black survival are hidden within the numbers that counted poor health outcomes. United by a mission to address racialized health inequalities through the provision of care, healthcare initiatives built by Black communities — through both tacit and technical expertise — model new ways to approach problems of access, trust, and inequality without waiting for data to confirm inequities.
Black Experts and Trust in Healthcare
Research shows that clinicians, data and systems researchers, and patients do not have a shared understanding of what safety and trust mean in clinical settings. Meanwhile, health experts continue to debate the very definition of concepts like “social determinants of health,” “health-related social needs,” and “racial health disparities,” as well as their measurability and actionability. Answering Dr. Camara Jones’s call to examine how — not if — racism operates in healthcare systems, through this project I will explore how Black experts — in clinical settings, in telehealth and health informatics research, and in public health — define, develop, and deploy trust through their work with Black communities. Examining the role that racialized health data plays in constructing knowledge about Black people and communities, I will ask how experts and communities come to understand and use this information, with the goal of understanding whether trust in data translates into trusting relationships.
By studying experts’ affective strategies to enact repair and deliver care in Black communities, and by incorporating community knowledge and feedback, this project seeks to reframe current debates about trust in healthcare and uplift Black agency and activism.
If your work connects to these ideas or you are interested in participating in this project, please get in touch.