One in five Black adults say they were treated unfairly due to their race in the past year when getting health care for themselves or a family member. Many avoid doctors and hospitals altogether out of fear of racism and poor treatment — just six in 10 Black adults say they trust doctors to do what is right most of the time.
These numbers, from a poll by the Kaiser Family Foundation and The Undefeated, show a majority of African Americans have low levels of trust in the health care system, expressing much less confidence in doctors and hospitals than do white people.
Medical mistrust in the Black community has been stoked by historical abuse and sustained by continuing perceived mistreatment during current interactions with the medical community.
Laura Bogart, Ph.D., a social psychologist and senior behavioral scientist at the RAND Corporation whose research has documented the effects of medical mistrust on HIV prevention and treatment outcomes, defines medical mistrust “as an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best possible results.”
The poll, which included interviews with 777 African Americans, found that slightly more than half (56%) of Black people said they mostly trust their local hospitals, compared with seven in 10 white people.
It also shows that seven out of 10 African Americans say the health care system treats people unfairly based on race “very often” or “somewhat often,” a significant increase from 56%, when a similar question was asked in a 1999 poll.
Consequences
The consequences of medical mistrust can be avoiding seeing a doctor or seeking health care or not taking medical advice. Those things themselves can have their own consequences, such as worse health outcomes and higher costs of care.
One study from the Hopkins Center for Health Disparities Solutions and Johns Hopkins Bloomberg School of Public Health shows that mistrust of the medical care system can contribute “to delay in care seeking, which complicates the care process and often worsens patient outcomes. Delays in seeking care can lead patients to initiate care at later stages of disease progression, increasing the costs of treatment.”
During the coronavirus pandemic, half of Black adults said they would not take a vaccine for the virus even if it were free and scientists said it was safe — even as the pandemic disproportionately impacted Black communities, according to the Kaiser Family Foundation and The Undefeated survey. Of those, nearly 40% cited safety concerns like insufficient testing and another 35% cited a general lack of trust about the government or the health care system.
A University of Pennsylvania School of Medicine study shows that distrust of the health care system is strongly connected “with self-reported fair/poor health.”
Causes
There are many historical reasons why medical mistrust is present, especially for the Black community.
One of the prominent examples that many Black Americans cite when it comes to where their medical mistrust grew from is The U.S Public Health Service Syphilis Study at Tuskegee.
The study, conducted between 1932 and 1972 to observe the progression of untreated syphilis, involved 600 Black men who participated without giving informed consent. Treatment was not provided, even after it became widely available, leaving participants to suffer.
An ad hoc advisory panel for the Assistant Secretary for Health and Scientific Affairs ruled the study “ethically unjustified” due to the known risks to the men and the study was ended. In 1997, President Bill Clinton issued a formal Presidential Apology for the study.
The legacy of Tuskegee — echoing the exploitation of slavery — has been lasting and powerful. To help dispel the mistrust, descendants of those involved partnered with the Ad Council to encourage Black Americans to get vaccinated against COVID-19 in 2021.
The maternal mortality crisis in which Black women — even famous Black women — are dying in childbirth at more than twice the overall rate.
Celebrities Beyonce and Serena Williams shared stories of difficult birthing experience and, most recently, Olympic sprinter Tori Bowie died due to complications during childbirth.
In a personal essay for Elle, Williams said she had to fight to get doctors and nurses to take her seriously so she would not become another statistic, while being in “excruciating pain.”
“No one was really listening to what I was saying,” she said. “I may have passed out a few times.”
Williams’ experience is not uncommon for many in the Black community. One study found that compared to other racial groups, physicians are twice as likely to underestimate Black patients’ pain.
Seven years ago, Dr. M. Norman Oliver and other researchers explored the beliefs of 222 white medical students and residents.
The results revealed that half of the white medical students and residents held false physiological beliefs about African-Americans. Nearly 60% thought their skins were thicker, and 12% thought their nerve endings were less sensitive than those of white people.
Experiences
Black Connecticut residents have had their own experiences that fostered medical mistrust.
When Sonia Taylor-Smith went to a local emergency room for help with “excruciating pain” and bleeding and bowel issues, she reportedly struggled to get medical staff to attend to her. A sample she left for testing was ignored so long it became unusable, she said.
Things did not turn around for her until Taylor-Smith told hospital staff that she was going to make a complaint against the hospital about her treatment.
“My issue is that [this] should have never occurred …I shouldn’t [have had to] walk away from a hospital being in worse condition than when I came in because people aren’t sanitary,” she said.
“This is how people of color die. I’m articulate. I advocate for myself, and I still had difficulty getting what I need. Imagine someone who [doesn’t have the] ability to advocate for themselves, because (of) intellectual [disability] or [are] induced with medication and don’t have access to language to speak on their own behalf. This is the epidemic [they mean when] they are saying make racism a public health crisis,” she said.
Kyra Brown said she received incorrect information about her fibroid condition and the different treatment options available, and while pregnant was also treated for gestational diabetes despite normal blood sugar levels. and all this other stuff. So I said okay, I said and where was the study done?,” she said.
“So he’s reading me all this information, all the studies in Europe and everywhere else, but the U.S. Every nationality, but people of color…I would tell medical providers, one size doesn’t fit all, you need to do studies in multiple places to really get…true data to really know how to move forward,” she said.
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Shortly after Tammy Denease’s husband had brain surgery in June, he began having pain in his ear, and became very ill, vomiting for three days.
She said they faced difficulties getting proper care and determining who would eventually remove a device from his ear.
“When we went to his regular ear, nose and throat doctor, he was like, no, they left it in your ear … finally figured it out. And so the next day, we go to the outpatient center in Bloomfield, we get there — they refuse to [remove it], because ‘oh he has a GI issue’. No, he doesn’t — it’s his ear.” she said.
“They call an ambulance to transport him, [but] the ambulance refuses to transport him. But they tell me, ‘Once you get to the hospital and you feel that you need us — call us and we’ll come, but we’re right here. So I had to drive my husband … an hour away to get help. And then when we get there, they treated us like we didn’t belong,” she said.
Denease said she also had her own trouble with the medical system. It took her six years to get approval for migraine treatment.
When she finally became approved and received treatment, the original headache center became an outpatient center. As a result, her bill was $2,600, though the same care at an office branch in another town would have cost just $100, which she said was not told to her prior to her treatment.
“So I’m still fighting with that. But after a while of dealing with it, you get overwhelmed and you kind of walk away because it’s draining and it’s emotionally exhausting,” she said.
Denease said these incidents reinforce the lack of trust she has in the medical system.
“There is no trust, there just is no trust … we’re afraid of getting sick, but we know it’s gonna happen. So we just know that it is what it is [and] the attitude we take [is that] we take what we can get and try to glean the good out of it — that is to our benefit, and just realize that we’re going to be screwed on some level. So it’s a definite mistrust of not being treated. As a human being, [we are] not being part part of that Hippocratic Oath of looking after the well-being of the patient,” she said.
“You hesitate to go to the doctor, because [of] the emotional stress that goes along with it, it is very stressful. Because you’re wondering, okay, are they really telling me the truth? Are they going to experiment on me, because I’ve voiced my distrust of something or tell him I don’t like certain things…And you wonder, am I gonna get the top treatment or do you just give me the bare minimum just to get me out the door?,” she said.
What’s being done
Connecticut has individuals and organizations that are committed to repairing the gap between Black and other patients of color and doctors.
One of the major wins by health advocates for this legislative session is that a bill was passed that calls for the Department of Social Services to design and implement Medicaid reimbursement for the roles of community health workers, CT Mirror reports.
Community health workers, also known as outreach workers, health coaches, and patient navigators, help people navigate health care and social services and they are experts in navigating the obstacles that can come up when trying to access resources.
Health Equity Solutions Executive Director Ayesha R. Clarke said community health workers play an important role in providing health care to people of color.
“These are the ones that can help, because they look like a person from their community. They are from the community and [are] a resource for individuals who might not necessarily go to the doctor or to the dentist … all the time,” she said.
Community health workers do more than just diagnose and prescribe, Clarke said, and can help with transportation to appointments, filling prescriptions and advocacy.
“A community health worker can be the person to say, ‘Hey, I see your prescription drugs, this is going to help you with your diabetes. And this is going to help you with this … [They are] able to explain and speak the same language … and … also provide them with resources. So there’s an opportunity for community health workers to be embedded in the work,” she said.
Hartford Hospital has begun to leverage community health workers through its Neighborhood Health Service, ’s System Director Kelly Toth, APRN, said.
The full-service medical clinic, inspired by success of outreach programs during the pandemic, provides both primary and urgent care, with the goal of targeting individuals who would not have any other access or go themselves to a medical provider’s office, by walking the neighborhoods and making connections with people.
The full-service medical clinic sets up at a new brick-and-mortar location every day with medical staff, community health workers, social workers, and with someone from Greater Hartford Legal Aid when in Hartford.
Toth said that the most important thing that she has learned through the Neighborhood Service program is to establish trust and that when people are dealing with other personal needs, such as housing and food insecurity, health care takes a back seat at times.
“Little by little, we kind of chipped away at some of those barriers. We developed trust and a lot of times that start[ed] with a cup of coffee or a quick little chat … then eventually, we’ve just developed these wonderful relationships with these patients in these communities that probably would not have gone to the hospital or to a big primary care clinic,” she said.
Pareesa Charmchi Goodwin, executive director for the Commission on Racial Equity in Public Health, is charged with working to dismantle racism and address its impacts on public health in the state.
Charmchi Goodwin said lack of access to resources is a continued driver of medical mistrust, especially for Spanish-speaking areas of the state.
“We don’t always have good clarity, good outreach in translation services [to] let people know what’s going on… you can’t really have a conversation. Maybe you can have a simple interaction. But if you have some real questions or concerns, how are you going to have a real conversation about it?”
She said provider networks need to be looked at and that school-based health services and community health centers can improve access.
“But I think there are still pockets where people just don’t know where to go, or have had negative experiences when they have gone to access care,” she said.
As Hartford Hospital’s Program Director of Maternal Health Equity, Daileann Hemmings looks at maternal mortality by being “hyper focused on looking through the lens of equity.”
Her role includes working to encourage patients to become more involved in their care, so they can be informed and ask questions when they are engaging with medical staff about their health.
Hemmings is also creating innovative ways to discuss the importance of health equity and maternal health with her staff – in order to keep implicit bias in check as they work to provide quality health care with all clients.
“We all have some level of bias. We all were raised in a social space. And in that space, there are certain things that were done and some of them, we don’t even really know why,” she said.
“But the unfortunate thing is that for a lot of people who are just having these [biases] and behaviors that they’re not questioning, it is causing people to die.”