The pandemic has familiarized us all with the phrase “medical mistrust,” often framing those who have it as being irrational or uninformed. Oft ignored is the biomedical community’s long legacy of broken trust. Addressing cancer-related inequities will require health professionals to make concerted efforts to repair that broken trust.
Cancer and Broken Trust
People of color bear a disproportionate burden of cancer mortality and incidence. For example, despite similar rates of breast cancer, African American women are more likely than White women to die of the disease. Black and Brown women have higher rates of cervical cancer than women of any other ethnic group. In study of cervical cancer mortality, researchers found that Black women received less surgical care, but more harsh treatments like radiation, than White women.
This suggests that even when people of color trust the biomedical healthcare system – which many do – they may get treated differently. In other cases, they can’t get care at all when they need it.
The medical literature often refers to “medical mistrust” when talking about patients of color and their attitudes towards clinicians. Also talked about is “systems-level mistrust,” which is negative attitudes towards institutions (hospitals) and the medical profession (doctors).
As a matter of language, we prefer the term “broken trust.” It points toward the structural and historical forces that have created health and cancer disparities. In contrast, the language of “mistrust” places the burden on people of color. Broken trust is not some individual-level variable that can be intervened upon by, say, changing the attitudes of Black patients. Rather, the work lies in changing entire policies, medical education, research, and the practice of medicine.
History
The production of medical knowledge was enabled and sustained by the systemic abuse and exploitation of the most powerless among us: slaves, prisoners, orphans, and poor folks – who were, more often than not, also people of color. Such experiments were the norm until systemic reform took hold during the 1970s, inspired by the Civil Rights Movement.
The US Public Health Service’s Tuskegee study and the testing of birth control among Puerto Rican women are two of the more famous abuses. This history has affected the thoughts, feelings, and attitudes that many people of color have towards the health care system.
Studies indicate that Black patients are more likely to feel as if the medical profession has broken their trust compared to their White counterparts. Many patients believe they are putting their lives at risk as soon as they step through the doors of a hospital. Some will refuse to put their lives into the hands of a health care system they perceive as oppressive, while others who do so report not being happy with their care. Indeed, in a study with 145 Black patients recruited from primary care clinics, perceptions of racism and mistrust of Whites had a significant negative effect on trust and satisfaction with care.
This is not to deny that people of color can also be racist, being exposed to the same socializing forces that produce a racist understanding of the world. The cause of broken trust is grounded in histories of structural racism, from the enslavement of Black people, to Jim Crow, to mass incarceration. Inequalities in the medical workforce, medical school admissions, and research funding for scholars of color sustain racist practices and continue the cycle of broken trust.
Measuring Broken Trust and Barriers to Cancer Screening
When testing the concept of broken trust with a sample of urban Black and Latinx women, researchers found that it looks like three things: suspicion, disparities in health care, and lack of support from providers. Systems-level mistrust was associated with lower perceived benefit of breast cancer screening, greater perceived disadvantages of screening, and either no mammogram history or longer time between mammograms.
When the same construct was tested with urban Black men, systems-level mistrust was associated with avoiding care, challenges in health care access, lower satisfaction, and negative attitudes about prostate cancer screening. These studies demonstrate that measures of mistrust are robust and consistent. Systems-level mistrust has important implications for cancer screening and care.
Misconceptions about Black Masculinity and Cancer
Black men in the US have have poor colorectal cancer screening rates and the highest colorectal cancer morbidity and mortality rates in the country. Researchers have conducted surveys to support the theory that the lack of colorectal cancer screening is connected to masculine role norms and medical mistrust, with these two constructs being the primary barriers to screening in one multi-state study.
Toxic masculinity, however, is not specific to, or particularly more prevalent in, Black culture or Black men–even though Black culture and men get stereotyped as if it is. Black men and women have the highest rates of cancer morbidity and mortality across the board, indicating that the problem is way beyond Black men being reluctant to o get colonoscopies. The problem is not, therefore, the “toxicity” of Black culture, but rather the toxic nature of the culture of medicine. Researchers have to dig a little deeper into men’s perceptions of the health care system, but also into the policies and practices that shape cancer disparities.
Repairing Broken Trust and Bolstering Cancer Prevention
The medical professions have diversified significantly in the last few decades, with providers from India, Asia, the Middle East, and Africa now common in large medical centers. However, people who don’t regularly seek healthcare or who harbor mistrust of the health care profession continue to think of most providers as White.
Multi-level system changes must be incorporated to repair broken trust and bolster cancer prevention. Policy, education, research, and clinical care are areas of focus to address this problem. The legacy of medical abuse and exploitation of various vulnerable populations, and the broken trust this produced, has ongoing repercussions that worsen health and cancer inequities due to racial bias in clinical care.
Dismantling structural racism is essential to address and repair broken medical trust. In order to combat the conditions that exemplify the legacy of American racism, policies should not merely be race-neutral but antiracist. Policy makers must address racist ideologies in order to repair the broken trust of the medical profession. Policy makers must create policies that dismantle the elements of our medical care system that were built on a foundation of abuse and exploitation.
Focusing on Solutions
Developing sustainable solutions to address broken medical trust should include pipeline programs to increase the diversity of health care providers. More diversity is needed–not just among doctors, but at every level of the profession, including nurses, front desk staff, and emergency medical personnel. Continuing education in health care professional curricula focused on systemic racism and how it has affected Black and Brown communities is vital to addressing this problem. Others have called for re-imagining medical school curricula and dismantling the “White medical-industrial complex.”
To prevent cancer disparities in particular, oncologists cannot be left out of these interventions. Investing in oncology pipeline programs to diversify the pool of graduate nurses and medical students is one idea. Broadening the cancer prevention research agenda to refocus on broken trust and structural racism could help end cancer disparities among patients.
The mistreatment of cancer providers and explicit racism towards them also warrants attention. Individual healthcare professionals also have to take responsibility to build rapport with their patients. Professionals must understand and acknowledge that racism exists in both policies and person-to-person contexts. Providers must also assure their patients that they are advocating for them in spaces that hold legacies of oppression. The system of academic medicine has to better support scholars and providers of color as they pave the way for change.
Special thanks to Megha Ramaswamy for helping draft and edit this post.
Kaylon Thompson
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