Medical Mistrust: Organizational Approaches to Increasing Patient Confidence

A 2020 poll by the Kaiser Family Foundation found that 70 percent of Black Americans believe people seeking care are treated unfairly based on their race or ethnicity. Nearly 60 percent said they trust the nation’s healthcare system only some or almost none of the time to do what is right for their communities. Those beliefs are understandable: Black Americans have been historically mistreated by the medical system—and largely because of the color of their skin.

But medical mistreatment and the mistrust it engenders isn’t confined to history, nor is it limited to the Black population: today, women, people of color, Native Americans, and members of the LGBTQIA+ community experience minor or major discriminations that justifiably leave them distrustful of traditional healthcare services.

Medical mistrust is a major problem, and it comes with tangible consequences. It prevents some patients from seeking care or adhering to prescribed treatments and reinforces health disparities in the most vulnerable communities. At a time when trust is declining in science and other institutions, healthcare organizations must invest in rebuilding patient trust and doing so in a way that builds a path to health equity.

Read on to learn more about the organizational approaches to rebuilding trust and increasing patient confidence in the medical system.

Dr. Anne Markus is a professor and chair of the Department of Health Policy and Management at the Milken Institute School of Public Health at George Washington University. She earned her JD from the University of Lausanne, her MHS from Johns Hopkins University, and her PhD from George Washington University.

Social justice weaves through Dr. Markus’s work. An expert on the financing and organization of healthcare and access to care, she is particularly interested in how the health system addresses—or fails to address —the needs of women, trans and nonbinary persons, minorities, and children, including those of low-income and with special needs.

Dr. Markus’s interdisciplinary training in law, public policy, and health policy, along with 30 years of local, state, federal, and international experience, have allowed her to study maternal and child health services, private and public insurance (Medicaid and CHIP, in particular), community health centers, and health reform in the US and abroad.

“It’s a challenge for all of us in healthcare to repair the damage that’s been historically done to marginalized communities,” Dr. Markus says. “The divide was always there, but post-Covid, it’s much more visible, and perhaps even wider. Rebuilding trust with these communities is essential if we want to be effective providers of services and improve the public’s health.”

The Covid-19 pandemic illuminated the issue of medical mistrust. In November 2020, only 42 percent of Black Americans said they’d be willing to take a Covid-19 vaccine. A 2021 poll conducted by the African American Research Collaborative (AARC) found that discrimination from medical professionals deterred unvaccinated Black respondents from getting a vaccine.

That mistrust is symptomatic of major health disparities. In America, which has by far the highest maternal mortality rates of any rich nation, Black women are three times more likely to die from pregnancy-related causes than white women (CDC 2019). Mistrust of healthcare systems and providers can discourage those needing care from seeking it, reinforcing or even worsening the already grim statistics.

“You can look at this disease by disease, population group by population group, and we’re not seeing the improvements you’d like to see when you’re a healthcare organization or policy person trying to make decisions to improve the system, to provide the best care possible,” Dr. Markus says.

Many health systems and healthcare organizations have expressed a desire to rebuild patient trust and promote health equity. But significant barriers remain. Investment of time, resources, and governance does not guarantee results. A common mistake healthcare organizations make is assuming that they know what the community wants and needs, instead of asking and engaging with community members; the result is tone-deaf, ineffective, and alienating.

“There’s a power imbalance between many healthcare organizations and their communities,” Dr. Markus says. “These organizations have a lot of resources and influence, and that can contribute to a misunderstanding of their intent, and further create issues in terms of getting people to come in for care.”

A 2021 survey by Deloitte found that after an experience in which trust was lost, four out of five respondents said nothing could be done to get them to return to the same provider and/or health system. That underlines not only how hard it is to win back patient trust, but how important it is to provide equitable and culturally competent care in the first place. And integral in both is an acknowledgment of the deep biases and discriminations which have occurred and still occur in the healthcare system.

“It starts at the individual level,” Dr. Markus says. “As a leader of a health organization, or as a professional working within a hospital or clinic, you first have to do some introspective work on your own beliefs and biases. Whether you want to have them or not, they’re there.”

Some studies show that patients, particularly patients from marginalized communities, want healthcare providers who look like them. Furthermore, research shows that racial concordance can improve communication, trust, and adherence (AAMC 2023). Diversity in a healthcare organization’s providers would have a measurable effect, but perfect representation of every community member’s potential race and ethnicity is an unrealistic near-term goal.

Instilling cultural competence in the existing healthcare workforce is not a substitute for representation, but it is an able stand-in. Each organization’s cultural competence should be crafted for the specific needs of the community it serves. Those needs should be informed by the history of the community, the history of the organization, and coordination with influential people within that community.

Dr. Markus warns against the toothless diversity and inclusion measures that some organizations take: “The danger is that it becomes a sort of checkbox or token acknowledgment,” Dr. Markus says. “But, ultimately, a culture where people are respectful and actively listen to what patients are telling them would be a great first step.”

Several effective initiatives are already underway. 3rd Conversation partners with health organizations to host events where patients and providers can meet outside the exam room and discuss their experiences and frustrations with healthcare. Merck for Mothers, which aims to reduce maternal mortality worldwide, gathers women from at-risk demographics, OB-GYNs, and other perinatal experts for Equity Action Labs, facilitating communication between all parties. Geisinger’s ProvenExperience® refund program allows dissatisfied patients to get back their deductibles, copays, and co-insurance with no questions asked.

Health organizations should take the lead and make rebuilding patient trust a priority. Incentives exist: nonprofit hospitals enjoying a tax break for their nonprofit status are required to perform a community health needs assessment (CHNA) once every three years. Each CHNA must consider input from persons who represent the broad interests of the community served by the hospital facility, including those with special knowledge of or expertise in public health. Hospitals must also adopt an implementation strategy to meet the needs identified in its CHNAs. More incentives should be instantiated in public policy.

Most patients want health equity even if some politicians don’t. Advocacy for trust-building and culturally competent care must continue at the state and national level, with close coordination between both healthcare organizations and individual professional associations. There’s a relative consensus on what needs to be done to rebuild trust: it requires compassion, competence, care, and communication (AJMC 2021). There’s also agreement that improved trust leads to better health outcomes. A more equitable, reciprocal, and trusting future is possible.

“You absolutely have to be hopeful, and keep fighting the fight,” Dr. Markus says. “Whether you’re a professional working in a healthcare organization, or a leader, or a policy person—whatever your role might be—you have to continue fighting for these things.”