March 20, 2024
Article adapted from a presentation delivered by Dr. Peck Palmer at Roche Diagnostics.
As a child, my uncle was bleeding profusely. When my grandparents took him to the doctor, the doctor didn’t believe he could have hemophilia because it’s a “royal disease.”1 Thankfully, my grandparents did not accept that answer and took him to another hospital, where he was diagnosed with hemophilia.
That was my first encounter with inequitable care or delayed diagnosis. There are many more stories, just like my uncle's, that have happened to Black people around the world.
Cardiovascular disease impacts everyone’s lives, with someone dying of cardiovascular disease every 33 seconds.2
Diving into the intricacies of heart health, it becomes evident that there are health disparities in the prevalence of care. Some may think of race or ethnicity, which do play a role, as Black people are 30% more likely to die from heart disease than non-Hispanic white people.3 But besides race and ethnicity, there are other underlying issues that are negatively affecting health disparities. I urge you to consider a broader perspective as we explore this topic further.
Race in healthcare
Race was originally introduced in U.S. medical curricula in 1790 by Benjamin Rush, who asserted that Blackness was a particular kind of leprosy.4 It was believed that Black bodies differed – the pelvis,5 the lung capacity6 and that they could tolerate more pain.7 Many of the gynecological and obstetrical tools and procedures that are used today were based on gynecological experiments done on enslaved Black women without consent and anesthesia.
Race is not a biological factor. It’s commonly used, but it’s not accurate. Two unrelated individuals are 99.9% identical in their DNA sequence – only 0.1% varies. The 0.1% variance is found between individuals within the same race – more genetic diversity within a “race” than between “races.”8
That means there's more variation within a racial group than between them.
Race is being used as a type of pathology. It’s used in some of the guidelines, risk scores, insurance algorithms and care. By using race, we're actually giving differential care to individuals, even though they have the same burden of illness, inadvertently exacerbating health disparities and fostering increased bias and stigmas.
Change is happening. The largest group that provides guidance for internal medicine, the U.S. Preventative Services Task Force, is working to re-examine clinical practice guidelines and recommendations because they understand that individuals are not getting appropriate care.9 As a healthcare professional, we use guidelines to understand and treat, to know what test we can do in-house. But in fact, those guidelines may not have allowed for evidence-based information to be derived from diverse populations. And some inherent bias may exist there.
A prime example is race-correcting for the estimation of glomerular filtration rate (eGFR) testing.10 It’s not needed. The evidence on why to race-correct is not based on clinical information. In 2022, the National Kidney Foundation and the American Society of Nephrology recommended the exclusion of race when calculating eGFR.11
Social determinants of health
Recognizing the significance of social determinants is crucial. Many visible and It is crucial to recognize the significance of social determinants, conditions that affect one’s health, day-to-day functioning, and quality-of-life outcomes and risks. Many visible and invisible barriers to quality healthcare exist, including a patient’s ability to afford care; barriers involving health literacy, transportation and language; lack of or insufficient insurance; and healthcare workers’ stigma or bias toward patients.
Regrettably, studies reveal a significant underrepresentation of Black individuals in cardiovascular research and clinical trials.12 This underrepresentation is not just a statistic but a missed opportunity for diverse patient populations to contribute to generating robust data and key insights on the safety and efficacy of interventions. Including diverse populations in research and clinical trials not only informs patient care guidelines and medical funding priorities but also holds the potential to uncover vital data that would otherwise remain undiscovered, enhancing the generalizability of the results.
It is imperative that we confront and fully acknowledge the past research atrocities and exploitation that have led to a deep-seated distrust among specific populations. This historical context significantly influences their decision not to participate in research and clinical trials. However, we must also recognize that enrollment bias, such as the failure to advertise studies among underrepresented populations, inequitable inclusion and exclusion criteria, and insufficient compensation, are significant factors that further decrease diverse population enrollment. Addressing these issues is not just a matter of ethics but a necessary step toward building a more inclusive and trustworthy research environment.
We achieve real change when academic and non-academic medical institutions, in-vitro diagnostic companies, researchers, funders and other interested parties take active steps to build trust among communities commonly underrepresented in medicine and medically underserved. This trust is not a passive outcome but a result of understanding the populations’ medical and social needs, involving them in the development and design of the research and clinical trials, and ensuring they benefit from the study and relationship. Such inclusive research and clinical trials produce robust data that informs policies, guidelines and practices, laying the foundation for better health for all persons.
Health equity and practicing pathology and lab medicine
In our approach to laboratory medicine and pathology, we strive for a health equity lens, recognizing that each tube of blood represents a unique individual.
Health equity is giving people something that they need specifically so that they have an outcome that is appropriate for them. Health equity, far from being about unfairness, involves providing tailored interventions to ensure appropriate outcomes for each person.
Three critical considerations for labs regarding health disparities include identifying and characterizing disparities, understanding their root causes and implementing evidence-based interventions. Despite achieving these milestones, potential gaps persist, often influenced by conscious and unconscious biases that may inadvertently stigmatize populations.
Clinical labs, responsible for diagnoses and prognoses, can also contribute by developing real-time alerts to healthcare providers for positive patient outcomes. By operationalizing diversity, equity and inclusion (DEI) principles, labs can innovate diagnostics, utilizing patients as their own comparators and delivering care closer to them.
Partnerships play a pivotal role in this transformative process. Collaborating with advocates, communities and healthcare providers helps build trust, improves interpretation of testing products and elevates the value of lab medicine as a career. Recognizing that equity aligns with financial success, diverse teams foster creativity and innovation, benefiting product development and marketing efforts.
In essence, achieving health equity in laboratory medicine involves understanding the specific goals and tailoring approaches to diverse populations, ultimately creating a more inclusive and effective healthcare landscape.
