Discrimination in Care: Insights from the All of Us Study

Most people visit their doctor or local clinic every year for an annual physical exam or a prescription for medicines. Preventive care is important as it can help us avoid becoming sick. Some of us may find ourselves visiting a hospital for reasons ranging from day surgery to emergency care for an injury. We get to interact with doctors and nurses during these clinical encounters.

Research shows that some people are treated better than others when seeking care. But, surprisingly, we are not aware of any national data documenting experiences of discrimination in clinical settings for different populations. Documenting personal experiences in clinical encounters is important, as people who need care may delay or refuse to see a doctor because they fear that they might be treated badly. Everyone deserves to be treated with respect as no one wants to go back and relive a bad experience with a health care provider.

The All of Us study is a major undertaking of the National Institutes of Health. The goal is to collect health data on up to one million people in the United States. Anyone can volunteer to provide data through surveys and by sharing access to their electronic health records. All of Us includes seven questions where respondents are asked to assess whether they were treated with less courtesy, respect, or received poorer service than others; whether a doctor or nurse acted as if the patient was not smart; and if the provider showed signs of fearing the patient, acting superior to them, or not listening to what they were saying. Responses include always, most of the time, sometimes, rarely, or never.

[R]esults from the [All of Us] survey … may incentivize health care institutions to improve the patient experience.

My colleagues and I examined results from the All of Us survey between 2021 and 2022. During the study period, 37% of the 41,875 adults participating in the study reported having at least one of the above experiences sometimes, most of the time, or always when they visited a doctor’s office or another health care provider. Some population groups reported having these negative experiences in specific situations. For example, those who speak a language other than English at home were more likely to experience a clinician acting as if they thought the patient was not smart. Compared to high school graduates, those with at least some college education reported feeling like clinicians were not listening to what they had to say.

Our study is important for several reasons. First, we were able to document and report discriminatory experiences for many different populations, including people who identify as female, non-Hispanic Black people, renters, and Medicaid or Medicare recipients. Study participants also included those who report having no primary care provider, having more than one chronic disease, having some disability, or experiencing poor health. Second, we identified different and specific types of discrimination experienced by each population group. Finally, we were able to demonstrate that data from the All of Us study can be used to document experiences with discrimination that perpetuate health inequities.

Findings from this study may be helpful for monitoring progress in addressing the negative experiences that many patients encounter when using health care services. The large number of participants in All of Us allows us to understand the experiences of many population groups for whom we usually do not have data, including racial/ethnic minorities, sexual and gender minorities, and people without a usual source of care that is not an emergency room. Findings by studies using other national data sources either have selected populations or are too small to provide meaningful results that may be applicable to a particular group at the national level.

This study provides important insights on clinical encounters that can be used for policy formulation. For example, a policy mandate could require that hospitals include experiences of discrimination in the required patient satisfaction questionnaire. Ultimately, results from the survey, which are available to the public, may incentivize health care institutions to improve the patient experience.