Medical Mistrust: One Obstacle On The Path To Health Equity

Medical mistrust is a major barrier to achieving health equity.

Before we can effectively discuss health equity, we should talk about medical mistrust

Patient trust in healthcare was eroding before the pandemic. Between the 1960s and 2010s, confidence in healthcare leaders dropped by 53 percent, from 73 percent of adults to 34 percent. Yet, achieving equitable healthcare depends on turning the tide of trust between provider organizations and patients. 

Why fire departments are trusted more than hospitals…and other causes of medical mistrust

In September 2021, the AAMC Center for Health Justice shared the results of an online poll of a representative sample of 2,200 U.S. adults to gauge their levels of trust in institutions:

• 84% of people trusted their fire department
• 80% trust their pharmacy
• 79% trust their hospital
• 81% of White people trust hospitals compared to 69% of Black people
• 86% of Baby Boomers (born between 1946-1964) trust hospitals compared to 65% of Millennials (born between 1981-1996)

Beyond legacies of mistreatment, data reveals contemporary experiences that confirm historical sources of medical mistrust, including racial disparities like access to healthcare:

• 20% of U.S. adults have experienced discrimination in healthcare, with racial and ethnic factors most commonly reported
• 55% of patients reported a negative experience where they lost trust in a health care provider
• People who say they mistrust health care organizations are less likely to adhere to medical advice, keep follow-up appointments, or fill prescriptions. Medical mistrust may prevent people from getting care, they may be mislabeled as noncompliant or be blamed for treatment failure
• A Press Ganey survey showed that minorities perceive and experience less clinical excellence and caring behaviors from providers:
  • Experience scores for follow-up with test results are 200% lower for Blacks, Asians, and Hispanics compared to White people
  • Experience scores for helpfulness are 200% lower for Blacks, Asians, and Hispanics compared to White people
• A 2016 survey of White medical students and residents revealed that 50% believed one or more myths about physical differences between Black and White people. One such belief was that Black people’s nerve endings are less sensitive than White people’s

How the pandemic has affected mistrust in healthcare

The COVID-19 pandemic has brought issues with healthcare disparities to the fore. BIPOC populations (Black, Indigenous, and People of Color) face increased exposure due to many factors, as well as access barriers to testing, treatment, and vaccines, contributing to disproportionately high rates of hospitalizations and deaths for people of color. 

While Hispanic people make up 18% of the U.S. population, they represent 24% of COVID-19 cases and 17% of deaths. Black people make up 13% of the U.S. population yet account for 14% of deaths. 

And while some surveys show that the pandemic has eroded trust with some groups (an AAMC survey found that adults with incomes less than $50K and Millennials both had lost trust in healthcare through the pandemic), others show an increase in confidence. Thirty-nine percent of Americans “say they have a great deal of confidence in scientists to act in the public’s best interest, an uptick from 35% who said this before the pandemic took hold.”

Clearly, the pandemic has demonstrated that healthcare – even during a national emergency – needs to build trust with patients across all populations to improve health equity but also to achieve any meaningful value-based care goals that rely on behavior change.  

Why medical trust is essential to advancing health equity

Trust is the cornerstone of medical care. It's what encourages patients to stay with their physician, practice, or hospital despite changes in insurance coverage, office locations, and changes in life phases. It's the premise upon which patient referrals grow. Without trust in one's clinician, treatment plan and medication adherence breaks down, as well as the necessary levels of communication that can inform clinical decision-making. 

Trust in healthcare providers, organizations, and programs influence a patient’s willingness to receive medical care, spend out-of-pocket funds on care, and seek preventive screenings and care for behavioral health. A patient’s level of trust for their physician or provider has also been linked to improved patient experience and perceptions of care, as well as health outcomes. 

Yet, healthcare is struggling to make the connection with diverse populations (race, religion, sexual orientation, gender identity). Healthcare isn’t “one size fits all” so it stands to reason provider trust is earned and strengthened in different ways for different peoples.

The critical data-trust connection 

According to reports from the Centers for Disease Control and Prevention (CDC), race and ethnicity data is missing for:

• nearly 40% of people who received the COVID-19 vaccine
• 35% of people who’ve been diagnosed with COVID-19
• 15% of people who died from COVID-19

Without adequate and accurate REaL (race, ethnicity, and language) data, provider and community organizations cannot make data-driven decisions or take meaningful action to improve health equity. The pandemic, again, has been a microcosm of the more significant challenge. While collecting, capturing, and reporting on REaL data requires systems, processes, and training, it starts with trust.

According to a 2021 poll by the AAMC Center for Health Justice, 55% of patients are more willing to share their information with healthcare providers with identifiable information, like name or social security information, removed. And six in 10 adults have concerns about sharing their social and online activity data in a healthcare setting. 

Data is vital to reveal disparities that healthcare leaders and clinicians may be blind to or overlook. However, when patients distrust the system, they are less likely to share self-identifying data. If not handled appropriately, the relationship could erode further, making valuable data even more difficult to obtain. Medical mistrust creates a vicious cycle and takes everyone further away from the goal of breaking down barriers to better health and care.

Strategies to build trust in healthcare for a brighter future for health equity 

Valuable resources like the AAMC’s “Principles of Trustworthiness Toolkit” can empower leaders, clinicians, teams, and patient-facing staff to create more trusting relationships with patients and their families, communities.

But, a host of resources can be overwhelming and lack strategic focus. Having guidance, concrete approaches, and expert support to prioritize and implement a trust-building plan maximizes impact and growth for the investment of time and money.

Get back to the basics of building trust

Trust can be defined in many ways, but it’s helpful to focus on the characteristics providers want to engender and experience with patients to establish goals and connect them to broader equity (and clinical) objectives.

Research published in the journal of Global Qualitative Nursing Research provides some consensus on the qualities of trust in healthcare. “There is general agreement among U.S. researchers that the core of patient trust consists of the following in order of importance: loyalty or caring, competency, honesty, and confidentiality.” Trust is relational, constructed through interpersonal interaction, and depends on the patient’s perception of sincerity, empathy, altruism, and congeniality. 

Back to the work of AAMC, when “asked open-ended questions about what these sectors could do to earn their trust, respondents’ answers were direct.” And they all related to being a good steward of trust and relationships. 

Statements reveal the foundational pieces of building trust:

• “For starters, come to us and ask us first.” 
• “Follow up with action after your talks so that the citizens of our community will see that you mean what you say.” 
• “Take seriously issues of institutional racism and make a good faith effort to change the status quo, not just talk about changing.” 

The most touched-upon theme? Tell the truth even when people have made mistakes.

Having humility, suspending judgment, and reflecting on one’s inherent biases provides a starting place in combatting medical mistrust on the health equity journey.

Where are you on the ASAP relational continuum?

One simple way to anecdotally assess where you are with an individual patient, program, or team is to look at the evidence of your relationship. The acronym ASAP represents the four levels, starting with acceptance (of you as a person or professional as well as your ideas and suggestions), sharing (their information, problems, confidences), acting (on agreed-upon next steps), and partnering (equally contributions, vulnerability, shared decisions). 

Design a trust strategy that fits your healthcare organization

There are numerous approaches to implementing a trust-building competency in your organization. Examples of trust-enabling programs offer specific ideas. 

Approaches that may fit your culture could include:

• Create or expand patient advisory councils
• Host ‘listening sessions’ to engage the community in individual neighborhoods
• Encourage patients to bring a family caregiver or advocate to appointments
• Model and practice new behaviors like humility, vulnerability, and asking race- or gender-related questions
• Honor past mistakes or oversights and take actions to improve going forward
• Provide physician/clinician matching so that patients have options for a professional that has a similar background or ethnicity
• Provide specific opportunities to build empathy with “other” like Safe Zone Training

No matter your health equity mission and goals, or your work to merge value-based care with health equity efforts, building greater trust is a worthy investment because it puts you and your organization on the same side as the patient in their mind. This position is the only one that enables successful partnerships. 

Build a foundation of trust and improve health equity

Our team supports healthcare organizations in addressing the causes of health inequities, including medical mistrust. We create practical and effective solutions through data analytics, proprietary artificial intelligence and machine learning platforms, and proven expertise.

Learn more about RTI Health Advance Health Equity Consulting and connect with a health equity consultant.