Written by Jonathan Kanter, Director of EDI Training and Education
A young Black patient is worried that her concerns are not being fully heard by her doctor but is afraid to complain in fear that it will make things worse. Another Black patient, 4 months pregnant, is bleeding and scared she’s having a miscarriage. She is unsure if she should call for help, knowing she’ll end up in our Emergency Department.
There is a long history of medical mistrust among Black Americans. Often, this mistrust is attributed to the lasting impact of historical and inhumane mistreatments, such as the U.S. Public Health Study at Tuskegee, as well as the broad pattern of segregated and unequal medical care that has plagued our country since its beginnings. According to recent Pew Research Center research, half of Black Americans say that the U.S. health care system was designed to hold Black people back.[1]
There is increasing recognition that mistrust is not just a function of the past. It may be even more related to ongoing medical experiences. Pew Research also finds that the majority of Black Americans have had recent negative experiences with health care providers.[2] This is especially the case for younger Black women. However, we know very little about how medical mistrust is experienced, impacts care, and develops among younger Black Americans, such as children and adolescents. The above Pew Research surveys, for example, were not open to participants under 18 years of age.
A High School Medical Mistrust Researcher
Meet Federal Way High School student Sienna Mayo. For her AP Research class, she partnered with UW Medicine’s Office of Healthcare Equity to study medical mistrust in Black children and adolescents. Her findings are important for our whole community to understand.
“I’ve never really seen a study this sophisticated from a high school student before,” commented Dr. Leo Morales, UW Medicine’s Associate Dean for Quality Improvement. “It is pretty impressive.”
Sienna, who is Black, partnered with several elementary, middle, and high schools in South King County, ultimately recruiting 55 Black participants (ages 8 to 18) into her study. Given the levels of mistrust Sienna expected, she knew that recruitment would not be easy. It took several months. Once participants and their caregivers consented, the participants completed either an online survey or a qualitative interview with Sienna, depending on their age.
Sienna’s first finding was that, as expected, medical mistrust increased with age. But only slightly. More notably, even the youngest participants in her study (ages 8, 9 and 10) reported some mistrust of the medical system.
Sienna’s findings suggest that this mistrust does not appear to be a function of direct negative encounters with health professionals. These youth haven’t had any bad experiences yet. Nor is it due to parents vilifying doctors to their children or talking with them extensively about the history of medical racism.
“My study doesn’t put the onus on Black parenting for medical mistrust in their children,” Sienna reported. “Most parents are helping their children understand that doctors are here to help them and in general are trustworthy,” she explained. “But it is important to choose your providers carefully.”
“No one, of any race, really should disagree with that advice,” suggested Dr. Jonathan Kanter, a psychologist and OHCE’s Director of EDI Education and Training. Dr. Kanter advised Sienna on her study.
So why, then, do Black children and adolescents develop higher levels of mistrust? Sienna explained: “Medical mistrust shouldn’t be treated like a syndrome. I advocate for the interpretation of medical mistrust as a value, one that is learned and taught within a group over time. It is a belief, not exactly a lack of trust in doctors, but an awareness of the possibility of poor or inequitable treatment.”
“As many of us at UW Medicine know, this possibility is real,” explained Dr. Morales, who teaches one of OHCE’s foundational courses on this topic. “Many health and health care disparities exist, and Black people continue to get blamed for these health conditions when the true causes are in social conditions. These social conditions are in turn produced by structural racism.”
In addition, although most Black patients and families report receiving quality care here at UW Medicine, some continue to report experiences of personal mistreatment and subtle racism from providers and care teams. These direct and vicarious experiences, combined with well-known ongoing structural inequities and the historical factors, are enough to keep beliefs to be cautious and concerned about medical care alive in Black communities. These beliefs may be picked up and internalized by children as young as 8 years old.
What Can We Do?
As an emerging research talent, Sienna first points out that more research is needed. “This topic needs to be better funded so future studies can utilize improved methods and produce more generalizable results,” she noted.
Still, there are things we can and should do now. Most importantly, Sienna wants to raise awareness. “This is not an issue of a culture averse to modern medicine but of one currently and continuously isolated by it,” she concludes in her paper. In other words, the responsibility for change is on the medical community. The problem is not that Black people mistrust medicine; it is that medicine has not yet earned the trust of Black people.
While larger structural and societal changes are ultimately necessary, and this is a long-term problem, every individual relationship matters now. OHCE encourages every member of our UW Medicine community to reflect on their patient interactions: Are they adding mistrust, neutral, or working thoughtfully to build trust?
Small things matter, like how well you listen to someone, how patient you are with them, and how willing you are to discuss difficult topics like exposure to racism and social conditions. How willing are you to even discuss the elephant in the room – that the patient before you, even a child, may have well-earned caution about how their healthcare needs will be met, here at UW Medicine?
Students like Sienna Mayo should give us all a glimmer of hope. And Sienna is not alone. This last summer, UW Medicine hosted dozens of high school and college students in programs designed to support their growth and interest in healthcare, biomedical science, and related professions. Sienna’s study may be the first to have an impact on this important problem, but it will not be the last.
[1] Black Americans’ mistrust of health care and medical research | Pew Research Center
[2] Black Americans’ Views of and Engagement With Science | Pew Research Center
