Without Trust, There Can Be No Healthcare Equity

Mistrust of the healthcare system and other public institutions is a critical barrier to equity in health as we age. Today, a legacy of mistrust sown by a history of racial discrimination—through government policies, healthcare institutions and individual providers—is glaringly revealed in the high levels of skepticism in Black Americans concerning the COVID-19 vaccine.

Discussions of mistrust tend to start with the individual or community experiencing the mistrust. Yet that can be the wrong place to start; instead we need to ask why the targets of mistrust—the institutions—are not considered trustworthy, examining today’s lived experience through historical context.

Richard J. Baron, president of the American Board of Internal Medicine, recently wrote that amid such stark health disparities threatening vulnerable populations, “nurturing trusting relationships between physicians and patients is an urgent objective.”

Understanding the impact of mistrust on health equity—and putting in place interventions to increase the trustworthiness of healthcare and aging services —has become increasingly urgent during the COVID-19 pandemic.

No Trust, No Equity

Indeed, the healthcare systems’ ability to help people make the best decisions for themselves and their families requires a key ingredient: trust. A 2003 report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, highlighted how disparities in care result from biases and prejudice in the healthcare system and how people who are racial and ethnic minorities experience a range of barriers to accessing care, which include stereotyping. Such realities undermine trustworthiness.

Evidence suggests that experiences of being stereotyped by race, gender or age in the healthcare setting—experiences called healthcare stereotype threat—can lead to lower trust, worse health and lower healthcare use. In a 2016 study, patients ages 50 and older who reported experiencing a healthcare stereotype threat also reported higher levels of physician distrust and dissatisfaction with healthcare (lowering the likelihood of long-term relationships with providers), along with poorer mental and physical health. 

Mistrust also is associated with lower medical adherence, and patients who reported a healthcare stereotype threat also reported lower flu vaccination rates. Underlining that reality: Recent AARP research revealed that most adults ages 50 and older who are hesitant about getting a flu vaccine are also hesitant about getting a COVID-19 vaccine. Instead of starting with the individual or community experiencing the mistrust we should ask why the targets of mistrust—the institutions—are not considered trustworthy.

Instead of starting with the individual or community experiencing the mistrust we should ask why the targets of mistrust—the institutions—are not considered trustworthy.

To regain trust we also must address racial discrimination in aging services such as the inequitable access to quality home- and community-based services and other policies that have denied older adults of color access to housing. There is additional evidence of inequitable supports and services for sexual and gender minorities as they age. Today, as public health and aging services seek to promote health and provide preventive services such as vaccines, they are operating from a deficit. They must regain lost trust, or gain the trust they never had earned.  

A Need to Understand History

Thus, to find solutions to the racial disparities in deaths from COVID-19, we must first look to the causes of mistrust. Deep in the ground of history lie roots that include, for example, the racist and unethical U.S. Public Health Study of Untreated Syphilis that took place in the City of Tuskegee. Over time, discriminatory policies and the dehumanizing personal interactions experienced by generations have strengthened and deepened these roots. Recent research suggest that messages that  build “trust by addressing historic mistreatment and inequities in the vaccine distribution process may play a part in helping alleviate vaccine hesitancy among Black women and men.”

Efforts to illuminate these root causes are emerging. Recognizing the negative impact of racism on health, the American Medical Association  has encouraged the medical education system to develop programs and curricula that engender “a greater understanding of the causes, influences, and effects of systemic, cultural, institutional and interpersonal racism to prevent and ameliorate the health effects of racism.”

Meanwhile, the Health Anchor Network, a consortium of healthcare systems and institutions, has identified racism as a public health crisis, stating a “commitment to providing anti-racism and unconscious bias training for our administrators, physicians, nurses, and staff.” The American Society of Aging also announced a diversity, equity and inclusion vision for 2024, signaling the need for interventions in aging services as well as healthcare.

Real-Life Experiences

A healthcare stereotype threat can manifest from verbal, nonverbal, and environmental communication. It includes such situations as when a person experiences stereotyped expectations in the service setting that conflict with their identity and experience. For example, a person may experience slights, snubs or insults, whether intentional or unintentional, which signal the judgement that certain interventions are not appropriate for the individual due to a racial, gender or age stereotype, with older people of color potentially experiencing multiple stereotypes. Other individuals may feel biases in a care setting have affected their access to services such as testing or vaccinations.

The urgency of the current situation notwithstanding, much work lies ahead to effect lasting change. AARP recognizes that there are serious concerns among many people, especially in the Black community, that reflect shameful moments in American history where the medical community violated their trust.

That's why AARP has created a website to continue to educate its members and the public about COVID-19 vaccines. Equity in health requires we address the historic and current reasons behind mistrust. If we do not engage in interventions to establish trust, simply providing equal access to services does not help.

When people from any background think of our healthcare and aging services, one perception should arise first: trustworthy. Without that starter, disparities will persist.

Erwin Tan, MD, is a director at AARP Thought Leadership; Jean C. Accius, PhD, is senior vice president at AARP Global Thought Leadership in Washington, DC.