The importance of health equity research for all populations in the United States: SEQUINS hall of fame lecture

Abstract

Background:

Health equity research has recently been criticized by both liberals and conservatives in the U.S. This research holds potential to serve all U.S. populations by examining mechanisms of resilience. Resilience may broadly be defined as the development of the ability to withstand adversity that leads to the prevention or recovery from disease.

Purpose:

This is an invited paper stemming from a Society for Equity Neuroscience (SEQUINS) inaugural Hall of Fame lecture in May of 2025.

Methods:

The authors use research focused on Mexican Americans in the Brain Attack Surveillance in Corpus Christi (BASIC) project to illustrate how health equity research may be informative for all U.S. populations. BASIC is a community-based project with strong collaborations in the community.

Results:

Over the 25 years of BASIC’s existence, the stroke disparity among Mexican Americans and non-Hispanic White Americans has largely vanished with respect to incidence, recurrence, and outcome (neurologic, functional, and cognitive). This suggests that resilience mechanisms among Mexican Americans have improved stroke health outcomes. Using a framework suggested by Taylor and colleagues, the authors propose that these resilience mechanisms may help all Americans regardless of race and ethnicity.

Conclusions:

Studying resilience offers a novel, hopeful aspect to health equity research that may demonstrate benefits across the U.S. Still, resilience implies the need to suffer first. Improving health outcomes by removing barriers and ensuring adequate healthcare for all Americans should be the goal. Health equity researchers should work closely with communities to design and conduct projects that are important to that community.

Health equity research controversy

Health equity research is critical to reduce unnecessary suffering among certain underserved populations (see Table 1). Health disparities are also expensive for the U.S [1]. However, these seemingly obvious moral and economic motivations to seek health equity have received criticism from both conservatives and liberals in recent months. The Federal government seeks to dismantle diversity, equity, and inclusion (DEI) initiatives, and with it, health disparities research [2]. The reasons for this are supposed to uphold non-discriminatory laws such as the 14th Amendment and the Civil Rights Act of 1964. These laws, however, were intended to protect Black Americans and not provide additional benefits to the majority White American population. Some liberal groups have also criticized health equity researchers as opportunistic and excluding participation of communities of color in research leadership [3]. Indeed, during the expansion of DEI efforts by both Federal and foundation grant programs, many researchers who had never studied health equity were encouraged to do so [4]. These researchers were predominantly White persons, and their links to the community were minimal. Community involvement in health equity research is critical. Formal involvement, such as Community-Based Participatory Research (CBPR), may be optimal, but some communities do not have the time or desire to participate actively and create research infrastructure. Alternatively, community consultation, sharing outcomes, and active advisory boards may suffice. In the end, it should be the community that decides whether to welcome researchers and what type of involvement they want to have in the research.

Table 1.

Reasons Why Health Equity Research Is Important for All Populations.

1. Monitoring disease trends in underserved populations

2. Developing intervention strategies to improve health equity

3. Determining the efficacy and effectiveness of health care interventions

4. Implementation and sustainability of healthcare interventions at the community level

5. Studies of resilience that may be applied broadly across populations

6. Monitoring disease trends in the majority population

Potential solutions to help all Americans

As we move forward as a Nation, a beneficial approach may be to recognize the true value of health equity research for all populations. Cultural differences and approaches to health may be informative to different populations. Studying these cultural differences and health outcomes may not only benefit the underserved population, but they may also provide key insights for improved White American health.

The brain attack surveillance in corpus Christi (BASIC) project

To illustrate these points, we will draw on data derived from the Brain Attack Surveillance in Corpus Christi (BASIC) project. BASIC was initially funded in 1999 and began data collection on January 1, 2000. Continued stroke surveillance has ensued without pause since that date. BASIC is currently in its sixth NIH funding cycle. BASIC methods were previously published [5]. Briefly, all cases of ischemic stroke and intracerebral hemorrhage occurring in persons 45 years and over in Nueces County, Texas, are ascertained at the county’s five hospitals. There is one comprehensive stroke center and four primary stroke centers. All centers have MRI capability and neurology and/or tele-neurology availability. Cases are discovered by local personnel’s screening of emergency department and inpatient admission logs. Complete case capture is ensured by passive surveillance, which utilizes ICD-9 and now ICD-10 stroke codes. Previous surveillance of outpatient offices and the county coroner yielded such few cases that these locations were no longer included. Coordinators verify the cases after rigorous training, and cases are subsequently validated, masked to ethnicity, using source documentation by stroke-trained physicians. Patients are invited for a baseline interview and a 90-day outcome interview.

In the past almost 26 years, BASIC has ascertained 17,110 cerebrovascular events, 13,142 ischemic strokes, and 2120 intracerebral hemorrhages. BASIC’s focus is the Mexican American (MA) population of Nueces County. Nueces County is in South Texas, on the Gulf Coast. In the 2020 census, MAs made up 61.5% of the Nueces County population [6]. Nueces County has one of the lowest percentages of foreign-born Hispanic/Latin(x,a,e,o) (H/L) individuals of any U.S. county [7]. Routes of immigration seem to bypass Nueces County in favor of destinations such as San Antonio and Houston. This means that the MA population studied in BASIC is second, third, and fourth generation U.S. citizens; a microcosm of the future of the U.S. It is important to note that BASIC may not generalize to first generation immigrant populations or those of other sub-populations of H/Ls.

H/L are the largest US minority population. In 2020, 62 million H/L comprised 18.7% of the US population, an increase of 46 million since 2000. Mexican Americans are the largest sub-group, comprising 61.4%. H/L are projected to comprise one-third of the US population in 2060. In 2010, just 7% of H/L were ≥65 years of age; this is expected to rise to 20% by 2050 [8]. The cost of stroke from 2005–2050 in H/L is estimated at $313 billion USD [9].

In the early years of BASIC, we documented markedly higher stroke rates in MAs compared with non-Hispanic White Americans (NHWs) [10]. These disparities have vanished in recent years. When examining incident ischemic stroke rates, in those 45–59 years MAs had double the rates in 2000 and now have significantly less incident ischemic stroke than NHWs. Similar results occur for those 60–74 [11]. While some of the disparity resolution is due to decreased ischemic stroke in MAs, some of it is related to increasing rates in NHWs, particularly in the 45–59 year age group. This provides important evidence that studying health disparities is important both for the comparison and target populations. In an accompanying editorial to this paper, Tracy Madsen noted the importance of continued stroke surveillance for stroke prevention efforts across populations [12].

We find very similar reduction and elimination in MA:NHW stroke disparities in BASIC when examining stroke recurrence [13]. Even examining stroke outcomes, neurologic, functional, and cognitive show that over time the risk in the two populations converge [11]. Unfortunately, this is not the case when examining Black Americans stroke outcomes in Nueces County. In neurologic, functional, and cognitive outcomes, Black Americans continue to have worse outcomes compared with NHWs [14]. While stroke outcome may be similar among MAs and NHWs, reported activity of daily living needs are greater in MAs compared with NHWs [15], and paradoxically, intensive acute rehabilitation services are less commonly experienced by MA compared with NHW stroke patients [16].

Resilience

One critical factor that may be elucidated during health equity research is resilience to disease and poor outcome from disease (see Fig. 1). Resilience may broadly be defined as the development of the ability to withstand adversity that leads to the prevention or recovery from disease. Sadly, resilience develops from suffering and oppression. In a perspective written by Taylor and colleagues [17], the authors suggest that due to generations of having to find ways to survive and thrive, Black Americans have developed resilience mechanisms to fight off disease. The perspective suggests that studying these mechanisms may be advantageous to other populations as these resilience strategies “may transcend race [17].”

Fig. 1.

pathways for the development of resilience to disease and poor outcomes.

BASIC offers some clues to resilience among the MA population. As already discussed, the disparity in stroke incidence, recurrence, and outcome has vanished over the years, suggesting the development of strategies to prevent, treat, and rehabilitate from stroke that likely go beyond what conventional medicine has to offer. One study that suggests this is the Outcome Among Surrogates in Stroke (OASIS), a BASIC spin-off grant. This study examined surrogate decision makers of severe stroke patients. Patients had required ventilatory support, surgery, a feeding tube, or a new DNR order. The study hypotheses suggested that MA surrogate decision makers would report worse quality of communication and shared decision making with their loved ones’ health care providers compared with NHWs. We found the opposite: MA surrogates reported better quality of communication and shared decision making with the health care team than NHW surrogate decision makers [18]. While the literature is replete with studies about mistrust between family and healthcare workers, something has changed, at least in this community, in recent years. Perhaps this comfort with communication could extend to NHW families as well.

Similarly, in a study from another spin-off grant, the BASIC–Cognitive study, we explored caregiver burden among MAs and NHWs. BASIC–Cognitive is a population-based cohort study of cognitive impairment in those over the age of 65 in Nueces County, Texas. The cohort was assembled by randomly knocking on home doors and administering a cognitive screening text. During the pandemic, we switched to a random digit dialed telephone list [19]. The study’s main finding was a similar rate of dementia in MA and NHW populations and a slightly higher rate of mild cognitive impairment in MAs [20]. As part of this work, we looked at caregiver burden and familism in both ethnic groups using validated measures. Familism is a sense of belonging and obligation to one’s family that is strongly felt in many H/L cultures. The study showed that familism was associated with the perception of less caregiver burden, and that MA experienced greater familism [21]. This is a great example of a cultural belief that confers resilience to threats to mental health. It suggests that rather than continuing to cast Black and Brown populations as victims, that these strong populations may contribute to our broader knowledge of how to prevent disease and maximize potential when disease occurs, as suggested by Taylor et al. [17].

Other research groups have studied resilience in cardiovascular health. One such study in Black Americans found a strong association between resilience mechanisms and the American Heart Association’s Life Simple Seven’s, seven health behaviors linked to reduced cardiovascular risk [22]. This suggests that those with social, psychological, and cultural measures of resilience are more likely to engage in healthy behaviors.

In the current cycle of BASIC, we have adopted the Reserve Capacity Model originally developed by Gallo et al. [23]. Through a variety of validated measures, we seek to determine the demographic, social, psychological, and cultural factors that are associated with better stroke outcome. We will consider the contribution, interaction, and confounding of biological factors that are also important to stroke outcome. We hope to provide insight into stroke resilience mechanisms that will benefit the rising stroke prevalence as the population ages. It is our intention to consider how these mechanisms benefit not only MAs but the broader U.S. population.

The characterization of resilience in research methodology is complicated because it likely involves aspects of individual psychology, social constructs such as culture, community issues like interpersonal interactions and societal factors like wealth, health care access and racism. The Gallo model [23] considers these factors but directed acyclic graphs (DAG) are necessary depending on the research question. The study of resilience is in its infancy. So, too is society’s interpretation of resilience as catalyst or mediator or moderator of outcomes.

Study participation

Another possible misconception about Black and Brown communities is that mistrust continues to prevent these populations from participating in clinical research. We have found the opposite in BASIC and BASIC–Cognitive [24,25]. In both projects, we have found that a significantly higher proportion of MAs agree to participate in our research studies compared with NHWs, even though these studies do little to specifically recruit MAs. We treat all potential participants and their family members with respect. Our research coordinators are from the local community, some MA and some NHW, but we do not try to match the ethnicity of the coordinator with the participant. Our materials are all available in Spanish; however, since the community is non-immigrant, only a small percentage of potential participants do not speak English. The issue is that clinical researchers who are under great pressure to meet enrollment targets are told repeatedly that Black and Brown people are mistrustful and will not participate in clinical research. This may lead clinical researchers to avoid asking underserved populations to be in their research studies, and ultimately to the lack of adequate representation of Black and Brown Americans in clinical research. Indeed, the leading reason why Black Americans are underrepresented in cancer clinical trials is that researchers do not invite their participation [26]. Our data suggests that treating MA with respect and assuming that they will participate yields better participation than among NHWs.

Summary and conclusions

Health equity research in the U.S. expanded in recent years, prior to 2025, due to government and non-governmental organizations offering grant mechanisms for this type of research. This may have increased participation by researchers who were looking for money rather than a commitment to health equity and a willingness to work closely with the community to perform the research. The current administration in Washington has strictly limited health equity research, paradoxically invoking laws originally enacted to protect Black Americans. One strategy to continue health equity research is to note its potential to improve health in all U.S. populations. This is principally through examination of resilience as a mechanism to prevent, treat, and cope with disease. Elucidating resilience mechanisms has the potential to learn from one population’s behaviors that may help other populations. It is best that this research works with communities and is collaborative rather than paternalistic. While BASIC is not a CBPR project, which would be ideal, BASIC has extensive collaborations among healthcare, government, religious and educational partners in the community. The research is important to the community as it is to the investigators.

We must also recognize that resilience inherently means that people had to suffer to develop the mechanisms that now allow them to tolerate the social factors that conferred disease in the first place. It would be better to rid the U.S. of those injustices and remove the barriers that prevent equitable healthcare for all. This would likely improve healthcare for all Americans and reduce the tremendous cost of health disparities to the American taxpayer. Nonetheless, until the health equity vision is realized, studying and applying resilience may be a novel way to improve healthcare across the U.S.