Medical Mistrust: How Healthcare Leaders Can Combat Racial Disparities

An October 2020 survey by the Kaiser Family Foundation (KFF) found that nearly six out of ten Black Americans trusted the nation’s healthcare system only some or almost none of the time to do what was right for their communities. That mistrust is understandable: the nation’s healthcare system has a long history of mistreating its non-white racial and ethnic communities. Mistreatment ranges from the overt racism of Tuskegee to the more insidious disparities in care received from community to community and patient to patient.

The data behind medical mistrust, and even the term itself, remain somewhat nebulous, but a small number of studies have suggested that racial and ethnic minority patients are more likely to refuse medical treatment. Reduced trust can lead to fewer medical treatments, leading to worse health outcomes, which can further reduce trust. The contributing factors are many, but coordinated efforts are needed to break the vicious cycle.

What is clear is that racial disparities persist in the US healthcare system. More can be done to address them. To learn more about how healthcare leaders can help combat racial disparities in care, and help rebuild trust in the medical system, read on.

Dr. Darrell J. Gaskin is the William C. and Nancy F. Richardson Professor in Health Policy and Director of the Hopkins Center for Health Disparities Solutions in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health. He is an internationally recognized expert in health and healthcare disparities. His research strives to develop and promulgate policies and practices that address the social determinants of health and promote equity in health and well-being.

Dr. Gaskin is an international leader in health policy and health economics. He was elected a member of the National Academy of Medicine. He serves on the Congressional Budget Office Panel of Health Advisors and the Maryland Commission on Health Equity. He also serves on the Board of Directors of the American Society of Health Economists. Notably, in 2019 he received the Presidential Early Career Award for Scientists and Engineers. In April 2021, he was appointed as a research associate of the National Bureau of Economic Research.

In 2003, the Institute of Medicine (IOM) released its assessment on racial and ethnic disparities in healthcare in the US. It found that disparities did indeed exist and led to worse health outcomes; many sources across the healthcare continuum contributed to those disparities. Every year since that initial assessment, the Agency for Healthcare Research and Quality (AHRQ) has released an annual report on healthcare quality and disparities. Progress has been made, but racial and ethnic disparities continue.

“We did see some improvements in life expectancy for Black Americans up until 2017,” Dr. Gaskin says. “The lower mortality rates were due to reductions in mortality in cancer, homicide, and HIV. Covid-19, the fentanyl crisis, and obesity-related illnesses have set back the improvements in life expectancy for Black Americans, especially for those with less than a four-year college degree.”

Twenty years after the IOM’s original assessment, the AHRQ released its most recent National Healthcare Quality and Disparities Report (NHQDR). It found that racial and ethnic diversity had increased: the percentage of people who identified as two or more races increased from 2.9 percent in 2010 to 10.2 percent in 2020. It also found that the decline in life expectancy was greater for Hispanic and non-Hispanic Black groups than it was for non-Hispanic White groups, representing widening health disparities. Furthermore, the decline in life expectancy was greater in the US than in other comparable industrialized countries.

In January 2021, President Biden signed an Executive Order on Advancing Racial Equity and Support for Underserved Communities Through the Federal Government. That was followed by the release of actionable recommendations in the Health Equity Task Force report in November 2021. Both stated that racial and ethnic disparities in care stemmed from system-level factors like health services organization, financing, delivery, and healthcare organizational culture.

But addressing disparities through the lens of race and ethnicity in isolation can be misleading. Healthcare leaders need to consider intersectionality and the multiple axes of inequality that contribute to the social determinants of care. Furthermore, each community needs to be assessed and addressed individually.

“Healthcare leaders must know the state of the health of the minority residents in their service areas,” Dr. Gaskin says. “They must take the community needs assessment process seriously and identify the health needs of their communities and then tailor services to meet those needs.”

Bias is a major driver of racial disparities in care. It need not be explicit. The insidious nature of bias means it can sometimes be unconscious, unintended, or a result of ignorance rather than malice. As new technology comes into play, healthcare leaders need to be careful that bias is not unintentionally reproduced within new technology. AHRQ has identified the role of algorithms in exacerbating or perpetuating racial disparities as a key area of research.

But big data isn’t the enemy—when used correctly, it’s a hero. Accurate and specific data allows healthcare leaders visibility into what’s working and what isn’t. It helps identify patient needs so that providers can service them. Leveraged wisely, the right data is the antidote to ignorance.

“The Centers of Medicare & Medicaid Services (CMS) have required hospitals to collect social risk factors data,” Dr. Gaskin says. “This data should be included in the electronic medical records (EMRs). We need to create referral networks to help patients address their social needs.”

Building health equity into the future requires more than intention. It means evidence-based policies that make a tangible difference.

“States that haven’t expanded Medicaid should do so,” Dr. Gaskin says. “Providers are already required, by law and ethics, to serve patients of all backgrounds; those providers should be compensated fairly. We also need to continue the movement towards population health management and value-based reimbursement for healthcare providers. We need to pay providers for helping people stay healthy, instead of just paying for care of sick people. This means knowing what’s going on in your community and getting prevention care out for people who need it.”

America’s healthcare system must prioritize prevention. Preventing a healthy person from becoming sick is cheaper and more effective than caring for a chronically ill patient. Science and technology can help: it’s never been easier to identify people at risk of diabetes, and enroll them in a diabetes prevention program. Thinking ahead about the future saves lives. And it brings America closer to health equity.

“Health equity implies that race, ethnicity, educational attainment, income, and neighborhood should not determine how long you live and whether you are in good health,” Dr. Gaskin says. “Is it achievable? Absolutely. We must as a society make a commitment to invest in the health of all of our people.”