December 04, 2020 – 2020 has been defined by more than just COVID-19. For many, it’s been a year of uncomfortable truths, of acknowledgment and unlearning of implicit biases. In healthcare, 2020 has pushed providers to ask themselves tough questions, like why Black people are getting sicker than their White counterparts, and if institutional barriers and a checkered history are what has dampened patient trust.
It started with a slow burn, with scientists observing higher rates of COVID-19 infection and death among Black, Hispanic, and Alaska Native/American Indian (AN/AI) populations than in White people. In the early aughts of the pandemic, this came to the forefront through anecdotal evidence, with leading industry groups calling for more data regarding the virus spread among different racial groups in April.
By the end of May, the Department of Health & Human Services (HHS) could definitively say Black patients experienced COVID-19 infections and deaths at a higher rate than White patients, although that report did come amid industry scrutiny for being thin at best.
By November 2020, the Centers for Disease Control & Prevention (CDC) had reported that Black patients were three times more likely to die from COVID-19 than White people. These reports sparked industry efforts to understand the institutional limitations that cause these and other racial health disparities.
Source: The Centers for Disease Control & Prevention
And then, in a video seen around the world, the nation bore witness as George Floyd, an unarmed Black man, was killed by Minneapolis police officers. What came next was a wave of racial protests across the country and a national reckoning on race and racism.
In medicine, providers and clinical leaders looked deeper than institutional barriers causing COVID-19 racial health disparities, because in reality these disparities existed long before the virus. For example, Black women are more likely to die due to complications with pregnancy or childbirth than their White peers, leading the United States to some of the worst maternal health disparities in the developed world.
Per figures from the HHS Office of Minority Health, Black people are also 60 percent more likely to have been diagnosed with diabetes by a physician than non-Hispanic White patients. In 2016, Black adults were 3.5 times more likely to have end-stage renal disease (ESRD) than White patients.
Most experts agree that these disparities are the result of health inequities, not biological differences between Black and White people, or people of other races. Factors like access to care, the social determinants of health, and structural racism have all shaped the way Black people interact with the medical establishment.
Each of these issues is its own complex theme, deserving of its own study and list of policy solutions. But they are also woven together, stemming back to a history of racism and the way it has shaped centuries of medical practice. Overwhelmingly, that history has affected patient trust, a crucial component of the patient experience that when established, can result in meaningful patient-provider relationships and strong patient activation.
The trouble, experts are beginning to argue, is that patient trust isn’t exactly a given among Black communities. In some cases, trust isn’t there at all.
TRUST AS THE FOUNDATION OF POSITIVE HEALTHCARE INTERACTIONS
According to Danielle Brooks, JD, a lawyer and the director of Health Equity at AmeriHealth Caritas, trust is so essential to the healthcare encounter because healthcare is so very personal.
“You are really exposing yourself by talking about your history, habits, family, everything,” Brooks told PatientEngagementHIT in an interview. “And so, having a space where you can fully trust and fully be yourself to get the best care is really essential.”
Trust has become even more important as healthcare explores new models of care, like patient-centered care and whole-person care.
“Those paradigms really rely on that linchpin of patient trust to be able to give that type of care that’s personalized, that’s well coordinated, and that’s high quality,” Brooks added.
But some communities, like communities of color, haven’t been able to experience strong patient trust, Brooks said. Black and Brown patients aren’t always able to go into a medical encounter and feel like their provider will respect them or truly listen to their concerns. It’s those issues that are causing some racial health disparities, Brooks remarked, and that eroded patient trust even prior to the pandemic.
“Members of marginalized communities already know that barrier is to convince that person that you are of their same level and to be able to receive care,” Brooks stated. “There’s a cognitive, or at least a subconscious recognition of those marginalized people, that when you do walk into a situation, part of that identity is going to be judged upon. So I wouldn’t say that the trust has been there.”
Lack of patient trust can have negative consequences. As Brooks noted, poor trust can devolve into racial health disparities. It can also discourage access to care, medication adherence, or access to key preventive services like vaccinations.
As healthcare works to rebuild that trust and to close growing health disparities, it must put its current challenges into historical context.
THE HISTORY OF MEDICAL RACISM, ABUSE OF BLACK AND BROWN BODIES
To understand the historical roots of mistrust among Black and Brown communities, one must understand the historical roots of medical racism, according to Brooks.
“There’s a very good reason that historically marginalized communities do not trust the medical system,” she said. “And it’s because of this history.”
Dating back to 1619, when most historians agree the first enslaved Africans were forcibly brought to North America, people of color were not regarded the same as White people medically.
“If you look at Darwinism and even previous schools of thought, there were concepts that different races evolve from different species. And they really did use the medical society to rationalize the dehumanization of other populations,” Brooks explained.
That itself is a difficult scar to erase, Brooks explained, but the abuse of Black and Brown bodies that stemmed from those schools of thought exacerbated that damage.
Throughout slavery, White doctors used Black and Indigenous slaves for medical experimentation. Notably, the “father of gynecology” J. Marion Sims experimented on Black female slaves without anesthesia, which was not yet widely used. Sims rationalized the practice because the medical establishment at that time did not believe Black people felt pain the same way as White people.
That thought process would last throughout parts of the 20th century, when medical students would experiment on Black people because they did not believe they felt severe pain, Brooks said.
Even after emancipation, the way the medical industry regarded Black people was dangerous for their healthcare. After reconstruction, there was rampant illness among recently emancipated enslaved people, Brooks said.
“But it’s even further more interesting because they did start to move for public health to support the newly emancipated people, but there was also a theory that African Americans weren’t really equipped to live in freedom, and that’s why they were dying,” she explained.
These mindsets—that Black people did not feel pain the same way as White people, that they were genetically inferior, that they were “simple” or not fit for freedom—would lay the groundwork for centuries of abuse at the hands of medical professionals.
And while that abuse was felt regularly on a micro-scale, it culminated in two serious stains on the US health system: eugenics and the Tuskegee syphilis experiment. To be clear, these two events do not represent the full extent of serious medical racism. However, they do offer two glimpses into how structural racism has shaped medicine today.