Confronting medical distrust

Conversations I had in the summer of 2015 played a huge role in the research I do today. As a first-year master’s student, I was talking with members of Chicago’s African American community about their experiences and perceptions of organ donation. While the focus was meant to be on organ donation, the conversation kept circling back to a central theme: medical mistrust. They referenced the U.S. Public Health Service Untreated Syphilis Study (commonly referred to as the Tuskegee Syphilis Study), a study conducted on African American men between 1932 and 1972 later deemed unethical due to the failure to collect informed consent and withholding of known treatments for syphilis, among other reasons. They also brought up a news story from the time about a Latina woman who needed a kidney, but her brother was deported before he could donate to her. And then they shared personal stories about their loved ones’ interactions with healthcare providers. Listening to these experiences, I realized that medical mistrust was far deeper and more nuanced than how we were talking about it in academia.

My work aims to broaden the ways we think and talk about medical mistrust. One of the ways I do this is by examining what influences medical mistrust. One of my studies surveyed Black and white Americans and found that there were different routes to medical mistrust. In other words, people might be mistrustful but have different reasons for that mistrust. For some, they might have concerns about financial corruption in healthcare; for others, they might be concerned about racism in healthcare. This study also found that medical mistrust is connected to individuals’ own experiences of negative healthcare encounters and/or racism. This, however, is only part of the picture. When we communicate with others — whether face-to-face or through technology — we are exposed to the stories of those we may not even know. As a result, this study and others have found that the experiences of other people and the messages seen in media can also impact medical mistrust.

Although mistrust is associated with decreased likelihood of engaging with the healthcare system, it does not have to automatically mean complete disengagement with the healthcare system. Sometimes, this skepticism means people seek more information or are incredibly cautious. So, instead of persuading people to not be mistrustful, our goal should be to determine how we allow people to integrate that mistrust into decision-making. Thus, the other part of my work focuses on how clinicians and researchers can foster trust, including ways to acknowledge the experiences that contribute to mistrust. For instance, how do clinicians or health and science communicators become trustworthy sources of information when those who are mistrustful seek out information? I’m currently working with colleagues in the Department of Life Sciences Communication here at UW–Madison and at UBUNTU Research & Evaluation in Milwaukee to explore how Black Wisconsinites navigate health and science information and assess the trustworthiness of information in light of mistrust. We — along with the graduate students who have worked with us on this project over the last few years — have been having conversations with community members, who are our collaborators, to understand their experiences and how we can translate that into better practices for clinicians and communicators.

My work centers on the idea that medical mistrust is adaptive and not inherently bad. As someone who wants to promote healthy people and communities in Wisconsin and beyond, my goal is to shift our conversations away from putting the burden on underserved communities and instead onto understanding the reasons for mistrust. If we understand, and do not assume, reasons for mistrust, we are better positioned to address mistrust. This means that we would then be able to train physicians to have productive conversations with individuals. It also means finding ways to reach those community members who avoid the healthcare system altogether. If we do that, we can honor lived experiences while rebuilding trust. Doing so can increase the likelihood that people feel comfortable seeking care and health information from reliable sources.

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About the Author

Lillie D. Williamson is an assistant professor of communication science in UW–Madison’s Department of Communication Arts. Her research broadly examines how communication can contribute to and help address health inequalities. Much of her work has investigated communication related to medical mistrust, including the antecedents of mistrust.

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