Summary
Trust is the foundation for provision of healthcare to patients and affects patient outcomes and care quality. Patients who trust their providers are more likely to follow treatment recommendations and have better overall health. Trust in healthcare reflects care quality and access, and interpersonal dimensions of communications. Beyond financial barriers, the lingering influence of historic research and treatment abuses continue to erode trust for vulnerable communities. To leverage the potential for telehealth to improve trust and accountability in the healthcare system, access must be expanded for vulnerable populations and patients should be empowered to make informed choices regarding their healthcare. Measures for providing more sensitive and equitable telehealth care delivery are suggested.
The Seeds of Distrust
While the data suggests that most people like their doctors, overall trust in the healthcare system has eroded significantly in the last half-century. Historic research and treatment abuses sustain distrust among marginalized populations in particular. The infamous Tuskegee experiments, “an iconic symbol of racialized medical abuse within the African-American Community,” built on research abuses that began in this country with forced experimentation on enslaved people. Other examples reflect abuses by the healthcare system such as the forced sterilization of Latinx women in Puerto Rico, California and elsewhere, and the egregious disenfranchisement of Henrietta Lacks. Ongoing activities that honor her non-consensual contribution to science are intended to ensure continuing awareness of the imperative need for consent and integrity. Pandemic-induced changes to healthcare delivery have the opportunity to reset the trust imbalance by addressing the needs and preferences of vulnerable populations.
Do People Trust their Doctors?
According to a recent survey conducted by the National Cancer Institute, about three-quarters of all adults would trust information about cancer “a lot” if it came from their doctors, whereas 20% would trust the information “some” and just 5% would trust the information just “a little” or “not at all” if it came from their doctors. About the same number believe that they get high quality healthcare. In other words, even if people don’t trust the healthcare system as a whole, most people trust their doctors a lot.
Source: Health Information National Trends Survey
However, people who are Black or Hispanic, and those with low income, Medicaid insurance or without a high school degree have lower levels of trust, and believe their care quality to be lower than others. The variation in care quality is especially striking for people with these characteristics.
Source: Health Information National Trends Survey
Aspects of Care that Affect Trust
“I tell them to say his name. My son’s name is D’Antoni.”
Nicole B. had a normal pregnancy but noticed her son wasn’t eating properly.
“So, I told the nurses that I thought something was wrong. They kept pushing my concerns aside, not really taking me seriously. It was only when I told them that I was a nurse did they take any type of action. That’s what really upset me: what about these other Black women who have less income, less education?”
Stories like Nicole’s, where communications from medical providers are disrespectful and patient concerns are ignored with dire consequences, illustrate well-documented disparities in healthcare for people of color and other vulnerable groups. In one recent national survey, one in five patients reported that they had been subject to discriminatory treatment by the healthcare system, with most such incidents attributed to race. This and other surveys show that Black adults, followed by Hispanic adults, are the most likely to report such treatment, possibly reflecting unconscious biases or discriminatory beliefs by providers and healthcare workers that Black and Hispanic patients do not comply with treatment, are at greater risk for substance abuse, or are less educated and intelligent.
Care Quality
The National Healthcare Quality and Disparities Report tracks progress on more than 250 different aspects of healthcare quality. While quality is improving overall, disparities in access to care are especially notable for Hispanic people, who were three times more likely than White adults to have been uninsured for the entire prior year. People who lack insurance are only one-half as likely as others to have a regular doctor, an important factor in both care quality and trust.Care coordination was especially lacking for Black patients, resulting in higher rates of amputations for diabetes and sepsis infections after surgery.
Communication
Trust requires patients to believe that their caregivers and institutions act in their best interest and share their values. Patients’ ratings of communications with their healthcare providers may reflect these underlying trust perceptions. Overall, the National Healthcare Quality and Disparities Report shows that 11% of all patients said that their providers sometimes or never spent enough time with them, while 8% said that their providers did not listen, explain things well (7%) or respect them (7%) (shown in yellow highlight in figure). The type of insurance people had was most closely associated with how people rated these elements of care, with patients with no insurance or Medicaid insurance especially reporting that providers did not spend enough time with them. For example uninsured patients were more than twice as likely (20%) to report that doctors did not spend enough time with them compared with patients with Medicare insurance (8%). The largest communication-related disparities by race or ethnicity were for Hispanic and Asian patients who were more likely than White and than Black patients to report that doctors did not explain things to them or spend enough time with them.
Source: Based on Data from 2019 National Healthcare Quality and Disparities Data Query Tool
Provider Diversity
Some patients prefer to have a provider of the same background, and have better outcomes from such encounters. These preferences may reflect a belief that a provider who shares their identity shares their values and understands their lived experiences. This concordance could result in treatment recommendations that are tailored to the realities of the patient’s life, such as lack of access to healthy food and transportation or reluctance to seek mental health treatment.The underrepresentation of Black and Hispanic healthcare providers precludes much patient choice in the matter (see Figure). Just 5% of all physicians are Black and 6% are Hispanic, versus 12% and 18%, respectively, of the entire US population. Asians, by contrast, were significantly over-represented as physicians (17% versus 6% of the population). Similar patterns were seen for Black and Hispanic dentists, registered nurses, pharmacists and psychologists. Representation of Asian people differed by specialty.
Source: National Healthcare Quality and Disparities Report, 2019
(Created with the NHITC Data Fusion Center)
(Created with the NHITC Data Fusion Center)
