HEOR as a Signpost on the Journey to Health Equity
By Christiane Truelove
Health equity—patients’ equal ability to access the healthcare and resources they need, when they need it—continues to be a struggle everywhere in the world, 2 years after the COVID pandemic revealed the weaknesses in healthcare systems.
In the United States, racial and ethnic disparities in health and healthcare exist across and within states, according to the Commonwealth Fund 2024 State Health Disparities report. These researchers found that Black people are more likely than Asian American, Native Hawaiian, and Pacific Islander, Hispanic, and White people to die early from avoidable causes.
A report from the National Institute on Minority Health and Health Disparities (NIMHD), part of the National Institutes of Health, states that in 2018, the economic burden of health disparities by racial and ethnic minority groups is estimated at $451 billion, or $1377 per person, and the burden of education-related health disparities at $978 billion, or $2988 per person. Like the Commonwealth Fund researchers, this NIMHD-funded study also found the disparities varied by state. The economic burden was estimated using excess medical care costs, lost labor productivity, and premature deaths.
In 2018, the economic burden of health disparities by racial and ethnic minority groups is estimated at $451 billion.
For researchers in the health economics and outcomes research (HEOR) field, health equity may be the last thing they consider in their research, but according to Mani Keita Fakeye, PhD, health equity research lead and technical advisor at Deloitte, “Health equity transcends the entire research and health services value chain. It cuts across all strategic decision making and the whole body of knowledge, evidence, and thought,” she says. “From a philosophical standpoint, our entire conceptualization of health equity has room for improvement.”
“Health equity transcends the entire research and health services value chain.” — Mani Keita Fakeye, PhD
The importance of understanding differences
Eliseo J. Pérez-Stable, MD is the director of NIMHD and one of the authors of the 2023 report. Pérez-Stable, who originally is from Cuba, initially took notice of health disparities when he was at the University of California, San Francisco (UCSF), as a resident, a fellow, faculty, and then director of the Division of General Internal Medicine. “In clinical work, I realized how important it was for me to take care of patients who only spoke Spanish because I’m fluent in Spanish. That was my first encounter with inequities in the healthcare system.” Pérez-Stable partnered with other faculty at UCSF to develop a research program called Latino Healthcare, which eventually became the program on minority health.
At NIMHD, there is a more advanced perspective on these health outcomes differences. The term “health disparities” is used to describe differences in health outcomes that adversely affect socially disadvantaged populatons and are influenced by social and structural factors as biology, behavior and healthcare systems. These outcomes were not caused by “one’s identity of being African American, or Latino, or American Indian, or Asian, but was instead in the context of where we live that led to worse outcomes.” The mission of the NIMHD is “to lead scientific research to improve minority health and reduce health disparities.”
Whether researchers refer to “health disparities” or “health equity,” Pérez-Stable believes we’re all talking about the same thing, “Health equity is the aspirational goal of everyone having optimal opportunities to attain their best health possible and then applying that principle to make sure that barriers to promote good health are removed,” says Pérez-Stable.
“We have the aspirational goal of everyone having optimal opportunities to attain their best health possible and then applying that principle to make sure that barriers to promote good health are removed.” — Eliseo J. Pérez-Stable, MD
For Fakeye, her perspective on health equity originates from her personal experience. Born in Guinea, West Africa and growing up in South Carolina, she has now spent more than a decade in Maryland after attending Johns Hopkins for her public health training. “Hopping around to many different places, it’s become par for the course for me to understand different people, different types of thinking, and different values. It’s been great to actually be able to meet people where they are and connect with them,” Fakeye says. “Diversity is something that should bring us together.”
When it comes to health equity research, Fakeye believes the research teams themselves should be diverse. “If you have a team of people who are exactly the same and think exactly the same, that team will actually be very good at doing one thing very well. But if you have a team that’s diverse, that team has the capacity to do many things well—but it takes a fair amount of investment for consensus.”
“It’s insufficient to just say, ‘let’s bring people together.’” That’s an important starting point—but the how in health equity is just as important as the what in how we bring people together and who we bring to the table.”
“The how in health equity is just as important as the what in how we bring people together and who we bring to the table.” — Mani Keita Fakeye, PhD
Health equity requires data
Khushbu Balsara, DDS, MPH, is a second-year postdoctoral research fellow at Johns Hopkins Bloomberg School of Public Health, Health Systems and Policy. She analyzes health outcomes and access to healthcare both in the United States and in low- and middle-income countries. In the United States, her research focuses on Medicare and Medicaid coverage, specifically examining the recent expansion of oral health benefits for adults under Maryland’s Medicaid program, and assessing the access to smoking cessation programs and lung cancer screening among Black adults in Maryland. In lower- and middle-income countries, she is involved in projects such as JHU-Hanoi HEalS and BIGRS, focusing on injury prevention, trauma care and rehabilitation, and examining ways to strengthen health systems and emergency health services.
According to Balsara, one of the biggest challenges for HEOR researchers trying to examine the impact of health disparity on outcomes is access and availability of data from clinics. In her research on the expansion of oral health benefits and comparing outcomes to previous coverage, “when we went looking for the health outcomes, there were no evaluation reports to find. We are still looking at the gray literature.”
The collection of data outside of the clinic also presents challenges. “We plan to do interviews, but don’t know if patients are willing to come forward because of their past experiences with the healthcare system,” Balsara says. Even as an educated person, she felt overwhelmed trying to navigate the US healthcare system, having come from a country where she did not have to deal with privatized health insurance.
While policy makers order changes to improve healthcare, often these new policies do not include directions on how to evaluate their impact on outcomes. Data may not be collected, or if it is collected, it is not reported. “If you were thinking about strengthening our health systems, that is one of the very big connecting bridges that will help us actually study these outcomes with a magnified view,” Balsara says. “Because if there are no reports, how are we going to look at the future trend, how are we going to see how we can improve, how can we do better?”
And then there is the question of who can get access to the data needed to do health equity research, especially for researchers without generous funding to be able to purchase data from private entities. “Many early career researchers who have an interest in health equity might not be able to afford these data sets,” Balsara says. “To be equitable, we need to make sure the data are visible to the public, visible to researchers, and accessible to all.”
Even if data are available, their completeness, as far as the elements needed to determine health equity, is another matter. Pérez-Stable recalls speaking with representatives of one large health insurance entity during the COVID pandemic about the claims data of members. “They don’t know the race and ethnicity of their claims data, so they create algorithms to impute the data,” he says. “I know that artificial intelligence is here and there are people using it, but I hesitate to put all my trust in the data where you have more than half of the fundamental variables missing, and then the missing data are imputed based on an algorithm.”
“To be equitable, we need to make sure the data are visible to the public, visible to researchers, and accessible to all.” — Khushbu Balsara, DDS, MPH
Although researchers can make good guesses based on census data and ZIP codes, “it all boils down to having better primary data in the electronic health record or in the clinical context,” Pérez-Stable says. “I wouldn’t say we haven’t made progress, but different systems have different approaches to this—some are systematically doing it; others are not. While automated check-ins can have screens where a patient can answer questions about race and ethnicity and put them into the electronic record, not all practices use automated check-ins and a front desk registration person is not the right person to determine what your race or ethnicity is.”
Pérez-Stable points out that individuals are not usually asked about their educational background or other proxy for socioeconomic status in the clinic, especially if they have private insurance. “Private insurance doesn’t necessarily mean that you’re well off, it just means you’re employed with an employer who provides benefits,” he says.
In 2023, the World Health Organization (WHO) released the largest global collection of health inequality data. Importantly for researchers, the repository allows for tracking health inequalities across population groups and over time, by breaking down data according to group characteristics, ranging from education level to ethnicity. According to WHO, the repository’s data show that in just a decade, the rich-poor gap in health service coverage among women, newborns, and children in low- and middle-income countries has nearly halved. Moreover, by eliminating wealth-related inequality in under-5 mortality, the lives of 1.8 million children could be saved.
“The ability to direct services to those who need them the most is vital to advancing health equity and improving lives. Designed as a one-stop-shop for data on health inequality, the repository will help us move beyond only counting births and deaths, to disaggregating health data according to sex, age, education, region, and more,” said Tedros Adhanom Ghebreyesus, MSc, PhD, WHO director-general. “If we are truly committed to leaving no one behind, we must figure out who is being missed.”
HEOR research in the battle against health disparities
The role of HEOR researchers and health economists in addressing health disparities “is one that I’ve come to appreciate more from my current position as the director of NIMHD,” says Pérez-Stable.
“I think a lot of people are afraid to talk about economics in science,” Pérez-Stable says. “They think, ‘It’s money and we just do knowledge.’ But in the population science perspective or the political science perspective, that’s never been the case.”
When it comes to addressing health equity in HEOR, ISPOR believes its members have a critical role to play. Health equity ranked 5th of the top 10 HEOR trends identified by ISPOR members in the 2024-25 report. The organization’s Health Equity Research special interest group is advancing novel methods for assessing the health equity impacts of decisions on unfair differences in health and applying equity-informative cost-effectiveness analysis across markets, conditions, and payer types, as well as improving data sources used by the HEOR community to study health inequities.
ISPOR also includes health equity as a petal in its Value Flower. While she likes the depiction of health equity as a petal of the value flower, Fakeye says it should be a “more fundamental piece of the flower, like the stem.”
“We’ll have a more robust understanding of what health equity is when you think about it alongside other elements like the cost of a therapy or a treatment, the effects on productivity, the effects on quality-adjusted life years, etc. These all have health equity implications,” Fakeye says. “Health equity is not something to examine on the side—or through a quick subanalysis of race and gender—and you think you’ve checked off that box or that petal. It’s intersectional.”
Christiane Truelove is a healthcare and medical freelance writer.
