Seeking health care for a Black person is a roll of the dice all the time… We show up in the emergency room because everything else gets dismissed [by our caregivers]… so it gets bad enough that [there’s] no other choice until we have to get treated… That’s a terrible way to live.

– A Black patient on the topic of medical mistrust who participated in the recent study “Perspectives of Black Patients on Racism Within Emergency Care.”

Many other Black patients participating in the study expressed similar experiences with racism in health care, noting how doctors dismissed their concerns, provided inadequate information about medications, and handled their pain poorly. Resulting feelings of mistrust were compounded, they noted, by how few caregivers looked like them.

By amplifying the experiences and voices of Black patients, the study—by LDI Senior Fellows Anish K. Agarwal, David A. Asch, Raina M. Merchant, Eugenia C. South, and colleagues—provides data on people’s personal experiences of racism in health care. The work was funded by an LDI Bold Solutions Pilot Grant and published in JAMA Health Forum.

Health institutions formally acknowledge the presence and pervasive impacts of racism, but have lacked adequate information to design patient-centered solutions. 

Hoping to change this, the investigators chose to conduct their study in an urban emergency department (ED) because, as they noted, it serves “a critical role in serving historically marginalized Black communities,” and represents “the front door to a health system.” 

The investigators held 25 semi-structured interviews with Black patients shortly after their discharge from the ED at an urban, academic, trauma center, and then identified common themes from participant responses. Questions mostly focused on the participating patients’ perceptions, beliefs, and attitudes towards race and racism in U.S. health care broadly and in their recent ED visit specifically. The average age of participants was 45 years old, and 80% were female.

The themes that emerged fit into two domains: racism in health care and how that manifested in the care they received during their recent ED visit. The most common sentiment that participants expressed about racism were feelings of dismissiveness. Participants also pointed to the history of medical racism in the United States and to struggles with medical mistrust. Finally, they described facing presumptions by ED staff of having low health literacy, feeling skeptical post discharge, and experiencing discrimination on the basis of race and other socioeconomic factors. 

When reflecting on ED clinical care, the participants cited inadequate discharge plans; long wait times prior to receiving care, which many respondents thought related to their race; unexplained and biased medication treatment prescriptions; and difficulties with pain management, which was the most common concern among the participants.

Investigators also solicited recommendations from participants about ways to improve their experiences in health care. Common suggestions were to establish more sources of outside perspective (e.g., cameras) to provide more objective proof and validity to their experiences. Also, participants called for the diversification of the hospital staff, as the absence of Black clinicians made patients feel “othered.” 

The participant responses provide a deep, nuanced view into the persistent racism that Black patients commonly experience in health care. Incorporating these perspectives will be critical for health care leaders and policymakers to attain meaningful context from which to inform patient-centered approaches and interventions in emergency departments that help dismantle structural racism.

To learn more about the study and health justice, we asked lead and senior authors Drs. Anish Agarwal and Eugenia South a series of questions below.

What inspired you to conduct this study and why was it so critical to uplift the patients’ voices?

Agarwal: This was a part of an innovative call for projects from LDI’s Bold Solutions and, importantly for us, we wanted to begin the work towards dismantling structural racism in medicine with those experiencing it. Our team is made up of clinicians and health system leaders with the expertise to rigorously use mixed methods to understand a variety of perspectives. One great way of doing that is qualitative research.

What are important factors for studying experiences of racism in clinical settings?

Agarwal: It’s important to realize that how we deliver care and how patients experience care can be very different. As clinicians, we try our hardest to deliver high quality and standardized care to avoid errors and achieve great results. How patients move through health care experiences is very different and individualized, so to investigate that, a key element was to hear these perspectives and dive deep into them—something a quick survey couldn’t really help us answer.

What were your most important or surprising findings?   

Agarwal: In our work leading up to this study, we used text messaging to understand the experiences of patients leaving the ED, and an important finding there was that one in ten Black patients felt like their race negatively impacted their experience and care. To me, one of the most important concepts woven throughout the voices of our patients was that Penn Medicine is a great place which they wanted to improve and work with. Structural racism is a big, complex, and nationwide problem—not unique to us or our care. What is unique is that we are working with our patients to dismantle it.

Your study left it up to patients to describe racism. Why was that important to do? 

Agarwal: The individual experiences of racism are individual. How one understands, lives, and reacts to these moments is deeply personal and can evolve over time. Thus, along with other research, we wanted to keep this perspective and not be restrictive to any single definition.

What specific recommendations do you have?

Agarwal: A clear message we heard from these patients was to increase diversity in those taking care of the community. Our department continues to diversify our trainees and has built an anti-racism task force that has worked across roles and sites to help uplift voices and begin to pilot new research and strategies to support our patients and staff. Finally, our team is developing and launching the Lift Every Voice Platform, which is designed to provide a mechanism for staff to document racism and microaggressions among the workforce so that leaders can then address these issues which otherwise go unheard.

What are your goals as Associate Vice President for Health Justice and Executive Director of the new Penn Medicine Center for Health Justice?

South: We define health justice as both an outcome and a process. As an outcome, health justice is opportunity and wellbeing for all people. As a process, achieving health justice requires the examination and repair of power structures, rooted in the knowledge and experiences of communities harmed by existing social, political, and economic systems. We launched the new center in September 2023, and we have three portfolios of work: health system transformation, community action, and research (led by the Urban Health Lab at the Center for Health Justice). We are in the process of defining our initial set of priorities and projects, but I can tell you that at the core we want to draw out of the shadows the hidden structures that keep us sick and push these structures into the light so that we can truly transform who has access to opportunity and wellbeing. 

What can health systems do to contribute to positive change?

South: We first must understand, acknowledge, and be honest about the ways in which racism shows up within health systems. It’s complicated—we are dealing with something that has been part of the fabric of this country for hundreds of years. Not acknowledging that is a form of extreme gaslighting for people from communities harmed by structural inequity. This impacts our patients, and also our staff. And it’s not just about interpersonal racism—where someone may treat an individual poorly due to race—but also about subtle messages people receive about who belongs and who doesn’t, policies that may differentially impact people based on race and class and several other identities, and who gets access to opportunity and career advancement and who doesn’t. We also need to listen to and believe the people most impacted. That is why my team and I launched Lift Every Voice—to hear from staff directly on how they were seeing racism show up in clinical spaces and get leaders the information they need to act. That’s also why we did this study—we can’t fix what we don’t know about or don’t understand. Finally, we need to act. Trust in any relationship is built through a series of small actions that demonstrate that words are real. Justice is an action.

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The study, “Perspectives of Black Patients on Racism Within Emergency Care,” was published on March 8, 2024, in JAMA Health Forum. Authors include Anish K. Agarwal, Rachel E. Gonzales, Charlotte Sagan, Sally Nijim, David A. Asch, Raina M. Merchant, and Eugenia C. South.

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