Erick Roat (BEworks advisor) and Jeff Fayer (Patient Engagement leader) discuss the seismic healthcare questions about health equity and disparities in care. Specifically, should we look at patient behaviour through the lens of racial/ethnic health disparities? Should our patient solutions and approaches to care differ depending on the patient population? Roat and Fayer take a nuanced approach to answering the questions: We need to first address patient and physician awareness and education, followed by addressing patient mistrust, and incorporate empathy into our approach to care.

Jeff Fayer: Health equity and disparities in care are on my mind a lot. When we think about patient treatment and care, how much of our approach should be seen through a health disparity lens? Should we have different approaches to patient experience for people of colour and other diverse patient groups? 

Erick Roat: The question regarding “should we look at patient behaviour through the lens of racial/ethnic health disparities” is a very complicated one, but my answer boils down more or less to this: “Yes … and no”. The “yes” part of the answer refers to the fact that clear racial and ethnic differences exist in how people of different backgrounds think about or experience the healthcare system; in fact, strong evidence continues to emerge confirming that minority groups and people of colour routinely receive a lower standard of treatment when accessing medical services. With discrimination endemic in many social systems, including our medical system, it is essential to have an understanding and respect for how these experiences shape behaviours and attitudes around healthcare, including medical mistrust. 

A 2019 review study based in the US details an astounding range of areas in which Black, Hispanic and Indigenous people and other minority groups see a much higher prevalence of some medical conditions, poorer access to quality care and poorer outcomes than white patients. One illustrative example of the roots of medical mistrust is provided in a study that reviewed 20 years of data on analgesic pain control for hospital patients of different racial backgrounds and found that Black patients received markedly less medication for pain control than other patient groups in the US. Given that minority groups have objective experience – both historical and contemporary, which drives skepticism and mistrust – it is realistic to acknowledge that efforts to build trust with these groups will have to address these experiences head-on.  

The “no” part of the answer is focused on the potential for a narrow or “boilerplate” response to the knowledge that certain groups tend to have higher medical mistrust than others. Data tell us that medical mistrust might be more or less common within a given group, but they do not allow us to predict individual patient attitudes or experiences. Appreciating the experiences of minority patients and acknowledging the potential for mistrust open the door to better understanding and true dialogue with groups whose trust has been damaged. However, if we assume that all members of a group have the same attitudes or experiences, we close the door to understanding.  

It is tempting to think that there might be specific communications or actions that would help a given group “unlock” trust and the benefits that come from it. But I think this misses the mark and opens up chances for backfiring; this often happens when we try to convince a group or a person that “We understand how they feel”. From my perspective, the best foundation for ameliorating medical mistrust is a respectful understanding that the mistrust exists and that it is based on real experiences. Only when this shared understanding exists between a medical provider (or a company) and the patient, can trust start to be built.  

Beyond that point, trust can be built with members of disadvantaged or minority groups in the same way as it is built with anyone – through a history of respectful, trustworthy actions. In a wonderful examination of ways to reduce medical mistrust, Hostetter and Klein highlight the need to improve relationships by involving the patient as an expert, empathizing with their concerns and building real connections with patients. They recommend community changes to build trust, too, including working to remove systemic racism in the system, removing barriers to access, hearing patients’ voices and creating welcoming environments. In other words, the steps to take to improve medical trust for Black, Indigenous or Hispanic patients are similar to the steps you would take to build trust in the system for any patient; what is different is an understanding of the roots of mistrust, and why additional efforts are needed to build trust with some groups.  

Jeff Fayer: Addressing mistrust among people of colour and the diverse patient population is very important. But I think that if we look at the end-to-end patient experience, there are also other factors at play. 

Let us take COVID-19 vaccinations as an example. We know that early in the pandemic, vaccination rates among Black and Asian people in the US lagged significantly behind those of the white population. The topic of trust in healthcare and how this factor may have played a role in the disparity was often written on. Since then, vaccination rates seem to have increased in the US, with minority populations at or above rates among the white population. From this, I believe that mistrust is one very important factor in health equity, but only one factor. 

Some of the other factors that are important in health equity might involve awareness, education and representation of diverse populations. In my prior work with Sasan Jahanian (MSc) on an autoimmune disease called chronic spontaneous urticaria (CSU), we frequently heard from healthcare providers that the “textbook” examples of CSU were depicted on white skin and that the presentation of the condition is not as easily recognized by many healthcare practitioners on dark skin tones, often leading to misdiagnosis of the condition. When the condition was misdiagnosed, the misdiagnosis tended to be termed “neurotic excoriations”, which communicated to darker-skinned patients that CSU was a psychological condition rather than an autoimmune one, thereby leading to greater mistrust of the medical community.

Beyond textbooks, there was also a lack of representation in disease awareness programs whether sponsored by pharma or advocacy groups for CSU. These awareness programs again tended to depict the condition on lighter skin, leaving some people of colour to question whether the symptoms they were experiencing could even relate to CSU, since presentations that they would see in the media did not "look like them".  

So I think the points around mistrust are spot-on, but other factors – such as representation of diverse patient populations impacted by medical conditions, as well as provider awareness of what to look for – are also important to address. 

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