Editor's Note: This article is part of a series in partnership with the All of Us Research Program, which collects and studies health data to help scientists identify health trends. More than 80% of participants are from groups that have been historically underrepresented in research.
Trust is a key part of the doctor-patient relationship. When you have it, you're more willing to talk about health problems with your doctor and follow their advice. But that trust may be lacking in minority communities.
Studies show many people who are part of racial and ethnic minorities don't trust their doctors or the medical community as a whole. Black and Hispanic people have less trust in their doctors than white people, especially if they have lower income, less education, and don't have health insurance.
When people lose trust in the medical system, they don't use it as much. And they may not get the preventive care and treatments they need to stay healthy.
"If people aren't willing to use their access to health care services, that means that they're going to delay routine screenings, they're going to delay their wellness checkups," says Keon Gilbert, DrPH, associate professor in the Saint Louis University College for Public Health and Social Justice. "That's going to result in further inequities in the diagnosis of chronic diseases."
The pharma company Genentech surveyed more than 2,200 patients, about half of whom are considered "medically disenfranchised" because they don't have good access to medical care. About two-thirds of medically disenfranchised Black and Hispanic people said they don't feel like the health care system treats all patients fairly. About half said they skipped follow-up appointments or stopped seeking care because they didn't feel understood, and 1 in 3 don't participate in clinical trials or get vaccinated due to a lack of trust.
Why Don't Minorities Trust the Health Care System?
People in minority groups have many reasons to be distrustful. Their history is filled with examples of exploitation at the hands of doctors and medical researchers.
For example, J. Marion Sims, a 19th century doctor, made advancements in the field of gynecology by doing experimental surgery on enslaved Black women without their consent or anesthesia.
For 40 years, from 1932 to 1972, researchers from the Tuskegee Syphilis Study studied 600 Black men in rural Alabama, but didn't tell them what they were doing or give them any treatment.
In 1951, a doctor at The Johns Hopkins Hospital took cancer cells from a black woman named Henrietta Lacks without her knowledge or consent. Those cells have since been used in medical research around the world.
The decades that have passed since these experiments have not healed the wounds they produced.
"Just because we're further from the Henrietta Lacks story and time has gone by, we haven't forgotten. Those generational stories and that oral tradition has been passed down, generation to generation," says Janice Underwood, PhD, chief diversity, equity, and inclusion officer for Virginia Governor Ralph S. Northam.
These stories and others like them have made minorities feel used. They have been the subjects of research but not the beneficiaries.
"Communities feel that they're being researched on, what some people call 'drive-by research,' where people come by and collect survey data, and often they do not report back to those communities," Gilbert says.
A lack of diversity in the medical field is another problem. When minorities go to the doctor's office or hospital, often they don't see anyone who looks like them. Less than 6% of doctors in America are Hispanic, and only 5% are Black.
Early in America's history, the prejudiced belief by many white people that Black people were inferior and not capable of scientific thought or problem solving led to fewer people of color going into the medical field, Underwood says. "These doors have been shut to people of color for centuries."
Racial disparities also shape the conversations people have with their doctors. Research shows that minority patients are less likely to get the medical services they need than are white patients with similar symptoms. They also get less attention and empathy from their doctors.
What We Can Do to Improve Trust
The first thing health care workers can do is to "acknowledge the harms that have been done," Gilbert says. "Bridge the gaps and help communities and individuals and families move beyond these experiences of injustice."
Whenever possible, it's helpful for people to go to doctors who share their race and ethnicity. "People prefer to go to health care providers who look like them because there's an assumption that there's a little bit of understanding about who they are racially and culturally. Sometimes that opens up opportunities for engagement and honesty," Gilbert says.
One study shows that African-American men were more likely to talk to their doctor about their health problems and take advantage of preventive services like flu shots and diabetes screenings if their doctor was Black.
Training can help doctors who don't look like their patients become more culturally aware and sympathetic. "Black males don't want to be talked at, they want to be engaged in the conversation," Gilbert says.
One way for doctors to build more trust is to reach out to minorities in places where they feel most comfortable. St. Louis University partners with the nonprofit organization 100 Black Men to provide blood pressure checks and other screenings in barbershops, which is where many Black men seek out health information.
Telemedicine can be another bridge to minority communities. Talking to your doctor from the familiar setting of your home can be less intimidating than visiting a medical office. "It could be a way to help engage people that haven't been engaged very well," Gilbert says. "You don't feel like you're constantly being poked and prodded, and somebody is asking you the same set of questions."
It's also important for people of all races and ethnicities to know they have a say in their own medical care. "I think one of the biggest things that we can encourage patients to do is to understand that the medical treatment continuum is a collaborative process, and they are a coequal branch in that process," says Sable K. Nelson, JD, acting director of the Virginia Department of Health Office of Health Equity.
"Not only an equal, but actively equal," Underwood says. "Remember, you have power in your health. If you feel as though this is not the right course of treatment, you can say, 'No thank you. I'd like to go somewhere else.'"
One organization that is working to improve health outcomes in minority communities is the All of Us Research Program. Medical research hasn’t always included diverse groups of people. All of Us aims to change that. Its goal is to reach 1 million participant partners across the country to build a large and diverse health database.
