Over the past several years, a new branch of research has emerged highlighting disparities in health care associated with race, ethnicity, gender, sexual orientation, rural residency, lower socioeconomic status, etc. A PubMed query for the term "health disparities" yields more than 8,800 results in 2021, only to be outdone by 2020, when more than 10,000 papers addressing this theme were published. Contrast that with "resource allocation," which is an issue that has been amplified by the ongoing COVID-19 pandemic. Here we stand at just under 1,500 results for the current year and 2,200 last year.
Both health equity (and its antithesis, health disparities) and resource allocation fall within the purview of the ethical principle of justice, though the former might be considered descriptive and the latter prescriptive. Recently, I have found myself questioning the benefit of our collective focus on documenting how health care outcomes differ, in the absence of effecting the necessary societal changes to negate these differences. Thus, I pose the question: Does disparity research help bridge the gap or simply restate what we already know?
When the answer to a question is self-evident, it can be likened to the oft-cited parachute study by Yeh, et al. — a randomized controlled trial comparing outcomes when jumping from a plane, with or without a parachute. When I read a paper that concludes that a person is more likely to die from COVID-19 if they are Black, I regrettably surmise, It’s the parachute study all over again. We conduct disparities research because we often know the answer to our question before we see the data. So, what have we accomplished by putting these findings into print? Do we really need yet another reminder that the U.S. is inequitable, and might we inadvertently widen these disparities by highlighting them? What might the impact be, if all the hours and dollars spent on these “parachute studies” were instead used to buy parachutes (i.e., allocate resources) and educate populations known to be at risk? Could it be that we use disparity research as a mechanism to assuage our guilt about the hierarchy we have become complicit in propagating?
For many people, poor health outcomes are not just statistics on a page, but their lived reality. They may struggle to find a clinician or be reluctant to seek care from a health care system identified by these papers as unjust and ineffective. Thus, a vicious cycle is forged, where delays in care result in more severe disease at presentation, which leads to poorer outcomes, which in turn prompts further mistrust and avoidance among marginalized communities. From cancer to COVID-19, delays in care have been highlighted as contributory to higher mortality rates. Clinician shortages, capacity limitations, and geographic factors further contribute to restricting access to care. For example, in our nation’s EDs, minorities have been shown to have longer wait times. Accordingly, this serves as a form of rationing where frustration is pitted against desperation to deter certain patients from receiving care. In numerous rural counties across my home state of Georgia, there are no available obstetrical clinicians — including certified nurse midwives and family medicine practitioners. These deficiencies have been identified as a major factor in our state's abysmally high maternal and infant mortality rates.
I am not a researcher but I remember a lecture early in my career about the fundamentals of scientific publication. The speaker said that when presenting research, the author should ask him or herself three questions: Is this research “new,” is it “true,” and is it “impactful”? I would argue that much of the health care disparities literature only meets one of these criteria — true. For these findings are not new; we have seen them over and over again, in medicine and beyond. Furthermore, the research is not impactful in the manner we would hope: we have the same struggles now that we had decades ago. As medical technology has improved, these differences in care have also multiplied. The gap is now a chasm. A well-documented chasm.
Understandably, in the face of such seemingly insurmountable challenges, there appears to be little that any one individual can do. Writing a paper and concluding that we need to better apportion our nation’s mammoth health care spending may seem like the most effective way to raise awareness and contribute to change. However, as experts have discussed, much of the change we need is at the level of organizations and health systems. We must hold our leadership accountable for prioritizing equity. There must be less talk of payer mix and more focus on accessibility; less corporate culture and more nonprofit ideals. Health equity needs to be more than a seminar and even more than a shared value. It must become the litmus test by which all our institutional policies and priorities are judged.
I am a Black, female neonatologist and ethicist practicing in a large urban area. I see the effects of health care disparities in pregnancy-related care every day. I realize that regardless of my education, I have an increased risk of delivering a preterm infant when compared to my white peers. I sit at the intersection of privilege and disadvantage and I have lost tolerance for the status quo. If my life really matters, let’s do something now to level the playing field, in health care, academia, and beyond. We owe it to the next generation to decrease the volume on the disparity discourse, not by disregarding its relevance but by dismantling the system which allows it to continue.
Do you think health care disparities research has reached saturation? How can disparities be tackled in a productive way? Share your thoughts in the comments below.
Helen Williams is a neonatologist from Atlanta, Georgia. She also has a masters in bioethics and serves on her local bioethics committee.
Illustration by Jennifer Bogartz