Leaders must confront issues perpetuating unequal access, unfair practices.
Reviewed by Mildred M.G. Olivier, MD
“Of all the forms of discrimination and inequality, injustice in health care is the most shocking and inhumane because it often results in physical death.”
—Martin Luther King Jr
This quote cuts to the heart of the matter, but Mildred M.G. Olivier, MD, speaking recently at the National Medical Association’s 121st Annual Convention and Scientific Assembly, explained that other issues come into play before a meaningful discussion of this important topic can take place. Olivier is associate dean of the School of Medicine at Ponce Health Sciences University in St Louis, Missouri.
Olivier explained that when the topic of inequity is broached, complex feelings often emerge, including guilt, anger, resentment, and defensiveness. “You may perceive me of accusing you of being racist [or] sexist,” she said. “You may feel I have a specific political agenda or that I lack objectivity.” However, she noted, if health profession leaders cannot acknowledge and process these difficult emotions, how can they expect others to do so?
“Health professionals are not taught about the connections between white supremacy, oppression, injustice, and health,” Olivier said. “We have been socialized to believe that it is not polite to talk about racism, injustice, and oppression.”
She enumerated multiple educational objectives involving discussions of structural and personal racism, racial and ethnic health disparities, big data, importance of data collection in clinical trials, and education of patients and colleagues. The objective is to examine and dismantle racism head-on and not sidestep the issue on institutional/structural, personally mediated, and internalized levels. “We must examine structures, policies, practices, norms, and values to determine how racial inequities are being maintained and how could race be operating here,” Olivier said.
Olivier defined a health disparity as a difference, based on 1 or more health outcomes, that adversely affects members of a defined disadvantaged population. The difference is perpetuated by social injustice in which public and institutional practices, cultural representations, and other norms work to reinforce perpetuation of racial group inequities.
The most important component of this is the defined populations. These populations are designated by the US Congress, she stated.
Social determinants of health (ie, economic stability, neighborhood and physical environment, education, food, community/safety/social context, and health care system) involve inequality relating to health-damaging experiences resulting from the “toxic combination” of poor social policies, unfair economic arrangements, and bad politics.1 All of the elements involved in the social determinants of health interact to determine morbidity, mortality, life expectancy, health care expenditures, health status, and functional limitations.
She posed 2 questions. Do new medications, devices, and surgical procedures allow equal access for those who are underrepresented? Do underrepresentation in research and overrepresentation in incidence and prevalence of disease have a role?
A quick look at 2 breast cancer statistics illustrates the point: Olivier noted the death rate is 41% higher for Black women compared with White women, and only 6% of Black women participate in breast cancer clinical research. Olivier explained that not all segments of the population have benefited from advances in science and medicine, and the disparities in clinical and genomic research are well characterized. In addition, she said, distinct populations have been understudied in science, underrepresented in research, and underserved by medicine. Also, data representative of real-world patient populations are required to optimize clinical outcomes for all patients. The data show that 8% of the global population participates in clinical research, 80% of the participants are Caucasian, and 91% of the genomics databases only contain data from patients of European ancestry.
The NIH (National Institutes of Health) Revitalization Act of 1993 mandates the inclusion of women and members of minority populations in all NIH-funded clinical research as appropriate to the studies undertaken. The law’s primary goal is to ensure that research findings are generalizable to the entire population. To meet this end, clinical trials must be designed to provide information about differences by sex/gender, race and/or ethnicity. Despite this, the awareness of health disparities in clinical trials remains well recognized.
The American Academy of Ophthalmology Taskforce on Disparities in Eye Care2 identified the following issues: Members of minority populations face higher risk of ocular diseases, visual impairment, and blindness; older individuals are more at risk and disproportionately affected; sex and gender differences exist in eye care; and older Hispanic patients and others use fewer low-vision devices.
Regarding sociodemographics and diseases, the following problems have been identified:
This is the most common form of the disease across all patient populations. However, African American patients are 5 to 6 times more likely to have primary open-angle glaucoma (POAG) compared with European American patients. In addition, POAG develops 10 years earlier and progresses more rapidly in African American patients, making it the leading cause of irreversible blindness in this population.
In addition to glaucoma, Olivier described the inadequate treatment response to antivascular endothelial growth factor therapy for diabetic macular edema:
Olivier placed the burden squarely on clinicians and urged that data continue to be collected from underserved populations; that clinicians continue to acknowledge and pilot interventions to address social determinants including systemic racism; that they build infrastructure to identify modifiable determinants at multiple levels; that they elevate community voices, formulating ways to increase underrepresented population participation in clinical trials and genomic databases; and that they increase diverse populations to improve scientific understanding of various ophthalmic conditions and improve the standard of care for all patients.