National Institutes of Health R-series Grants portfolio of racism and healthcare, 2017–2022

Abstract

Background

Any form of racism in healthcare is an unacceptable barrier to receiving equitable and quality care, further contributing to health disparities among populations. For these reasons, it is critical to have a better understanding on the amount of research and scientific advances of funded projects aimed at racism in healthcare. An examination of the distribution of R-series funded research by the National Institutes of Health (NIH) on racism in healthcare during a 5-year fiscal year (FY) period (2017–2022) was conducted by the study team.

Methods

This cross-sectional study used publicly available data from the NIH RePORTER (Research Portfolio Online Reporting Tools: Expenditures and Results) for research project grants awarded on racism and healthcare during the FYs of 2017 to 2022. The number of R-series NIH funded projects on racism in healthcare were examined, including the abstract and public health relevance statement, number of publications, spending category, fiscal start and end dates, total amount of funding each year, funding agency/center(s), and type of funding opportunity announcements. Descriptive statistics were performed on the data by the research team.

Results

There were a total of 93 R-series grants funded during the FYs of 2017 to 2022. Most of the grants were R01s (77.4%); focused primarily on racism at the system-wide level (68.8%), and on patients (64.5%); the largest racial and ethnic minority group reported were African/American/Black (20.4%); and close to 40% did not report race or ethnicity. None of the grants focused in internalized racism, which is at the individual –level. From the FYs of 2017 to 2022, 0.07% of all NIH research funding was awarded to racism in healthcare.

Conclusion

The findings of this study showed the need for continued funding and of the need of more research on racism in healthcare, that potentially can reduce health disparities and inequities.

Introduction

Racism is a form of discrimination to a specific race or ethnicity [1, 2]. The Office of Management and Budget–defines ethnicity as: Hispanic or not Hispanic and has identified five races (White, Black, American Indian/Alaska Native, Asian, Native Hawaiian/Pacific Islander) [3]. The most extreme effect of racism can result in emotional and mental health trauma, as well as chronic stress [4]. Racism in the health care setting is manifested in distrust of healthcare providers and/or systems, potentially resulting in poor health seeking behaviors and/or decrease use of preventative services [5].

Racism leads to inequities and contribute to health disparities; is an expression of marginalization and oppression, and is based on unfounded beliefs of inferior status [6,7,8]. Studies have shown populations, such as Black and Hispanic, to have experienced racism in the healthcare setting; to have reported receiving worse care, poorer physical and psychological health outcomes, to have an inadequate patient-provider relationship, and higher morbidity and mortality rates when compared to their White counterparts [8,9,10,11]. Further, health outcomes from the COVID-19 pandemic has shown continued racial and ethnic inequity within healthcare, and the need to focus initiatives and resources that address racism [12].

Addressing racism is a complex concept, as it is multidimensional and impacts people at many levels of healthcare. Racism is a root cause of health inequities and are considered upstream factors (i.e., conditions and circumstances that provide the context on the source of the problem that shape the behaviors of individuals) [13]. Within racism, these upstream factors produce downstream effects, consequences and inequities, by affecting individuals and resulting in physical and mental health-related morbidities [14].

Literature review

The literature recognizes four major types of racism seen in healthcare: 1) internalized 2) interpersonal; 3) institutional; and 4) structural [14]. Although all forms of racism are regarded upstream factors [13], both internalized and interpersonal are forms that are at the individual-level or micro-level; while institutional and structural are system-wide or at the macro-level [14, 15].

Individual-level. Individual or micro-level forms of racism are called internalized or interpersonal racism [14]. Internalized racism is within individuals, resulting in conscious and unconscious acceptance of negative stereotypes of the respective racial group [16, 17]. Internalized racism has been seen to affect individuals, at all ages including those as young as 3 years old [18]. Studies have shown internalized racism to cause psychological distress (e.g., depression, anxiety) and result in internalized oppression [16, 19].

Unlike internalized racism which is within an individual, interpersonal is between individuals [19]. Interpersonal racism includes covert (e.g., implicit bias) or overt actions toward others [4]. Within healthcare, internalized racism can negatively impact the patient-provider relationship [20]. Racism in the patient-provider relationship may result in individuals being excluded or in receiving differential health treatments compared to other groups [17, 20]. For example, a United States (US) study reported that healthcare providers denied their African American patients pain medications due to racism, assuming they may misuse them [21]. This has been particularly seen among those with sickle cell disease, where a lack of access and delivery of high-quality care has been denied to African American patients, stemming from interpersonal and/or structural racism [22].

System-level. Institutional, systemic or structural racism, is the term used to describe forms of racism that exist in policies or within institutions or organizations; and foster discrimination by reinforcing inequitable macro-level systems that then support and enable discriminatory beliefs and practices [23,24,25]. These three forms of racism (i.e., institutional, systematic or structural) are embedded in policies, systems, and/or practices that generate unfair treatment and oppression of a specific race resulting in negative outcomes [6]. System level racism has been and remains to be a fundamental driver of health disparities [26].

Associations and causes of racism within healthcare have been emphasized and noted primarily as disparities among different races [20, 27, 28]. For example, a US study reported racial disparities in infant and maternal health and showed Black (3-times higher), and American Indian and Alaska Native (2-times higher) women to have higher rates of pregnancy-related deaths compared to White women [29, 30]. In the US, infant mortality rates are higher among non-Hispanic Black individuals (10.6 deaths per 1000 births) compared to non-Hispanic Native Hawaiian or other Pacific Islander (8.2 deaths per 1000 births), non-Hispanic American Indian or Alaskan Native (7.9 deaths per 1000 births), Hispanic (5 deaths per 1000 births) or non-Hispanic White people (4.5 deaths per 1000 births) [31]. The U.S. Centers for Disease Control and Prevention (CDC) [30] reports that even though many social determinants of health, such as healthcare quality and underlying health conditions contribute to infant and maternal health disparities and inequities, they are still rooted in some form of racism (e.g., implicit bias).

Racism is a major contributor of inequities and for this reason research on racism in healthcare must continue [32]. A way to address racism in healthcare is through the allocation of funds. Funding is one of the major ways to identify opportunities to improve care, and develop and sustain programs [33]. Federal funding through grants allow scientists to seek an understanding of the causes of health disparities in order to advance and improve human health, reduce burden of disease and achieve health equity [34, 35]. One of the largest public funding sources of biomedical research in the US is the National Institutes of Health (NIH). NIH is an important stakeholder in understanding the effects of racism on health. NIH is made up of 27 different institutes and centers, each with their own specific research agenda focused on specific diseases, illnesses, or populations [36]. Although racism has been linked to poor health outcomes, little is known on the type of R-series research, population focus and scientific advances of funded projects aimed at racism in healthcare, and for this reason this portfolio analysis was conducted.

Methods

Grant search strategy

Our study team conducted one search of funded NIH grants during January 1 and 9, 2023. Selective text query in the NIH’s Research Portfolio Online Reporting Tools- RePORTER (https://reporter.nih.gov/) was used by the research team [36]. This cross-sectional study used RePORTER, which is a publicly available website that provides access to descriptions of funded NIH grants. Five fiscal years were examined in this NIH portfolio analysis (2017–2022). The analysis includes a vast amount of information, including the title of the grant, project number, abstract text, public health relevance statements, NIH spending category, project start and end date, publications, funding history, and type of funding opportunity announcements (FOAs).

Statistical analysis

Screening and eligibility

Five federal fiscal years (2017–2022) were examined as it represents one RO1 funding cycle. The research team used a three-step procedure of the screening and eligibility of the grants; and are detailed in Table 1.

Table 1 Three step screening and eligibility process

The results of the search are outlined in the PRISMA flow diagram (Fig. 1) [38]. The PRISMA flow diagram shows the flow of information through the various stages of the screening and eligibility review; as it outlines the number of records identified, included and excluded, the reasons for exclusions, and the final number of studies reviewed [39].

Fig. 1

PRISMA 2020 flow diagram: Racism and healthcare

Descriptive statistics were calculated. Given that the study did not involve human subjects, institutional review board approval was not needed. For this study the research team used the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline checklist [40].

Results

Results from this portfolio analysis showed that during the FYs of 2017 to 2022 NIH funded 93 grants on racism in healthcare (see Table 2 and Table 3). The largest R-series mechanism funded were R01s (77.4%), and most FOAs were program announcements (PAs) or program announcement receipt (PAR-a type of PA; 64.5%). More than half (68.8%) of the studies focused solely on racism at the system-wide level (i.e., structural or institutional), while few (16.1%) were on the individual-level (i.e., internalized and interpersonal racism), or included both forms of racism (15.1%; i.e., individual and system-wide; see Table 2 and Table 3). Based on this, most publications (57.9%) disseminating the findings of the studies focused on system-wide racism in healthcare. (Table 2).

Table 2 Description of grants funded from 2017 to 2022: Type, length, population and number of publications

Table 3 NIH RePORT R-series Funded Grants on Racism in Health Care from Fiscal Year (FY) 2017–2022

Financial and budget analyses

During the FYs of 2017 to 2022, NIH invested a total of $130,150,310,674 in research projects, and yet during this same period $91,889,931 was allocated to the 93 grants on racism in healthcare, representing 0.07% of the total (Table 2). Of the 27 funding agencies/centers, 19 provided funding during these five FYs (2017–2022). Among these 19 NIH agencies/centers, there were 173 funding amounts with multiple agencies/agencies allocating a sum of money during the same year. For example, one 5-year grant had eight amounts of money allocated, which included supplements. Of the 93 grants, there were two that were funded beginning in 2021 and 2022, but under “History,” there were no monies noted for 2021 or 2022 and for this reason no dollar amounts were reported (see Table 3).

The top five NIH agencies/centers that funded the most projects were the National Institute on Minority Health and Health Disparities (NIMHD; 23.7%; 41/173), the NCI (12.1%; 21/173), Eunice Kennedy Shriver National Institute of Child Health Human Development (NICHD; 11.6%; 20/173), the NIH Office of the Director (11%; 19/173), National Institute of Mental Health (NIMH;10.4%; 18/173).

Of NIH’s 315 RCDC spending categories, most of the 93 grants (95.7%; 89/93) reported them; and a total of 127 RCDC spending categories were noted, with the top five categories being, Behavioral and Social Science (88.1%; 82/93); Clinical Research (88.1%; 82/93); Social Determinants of Health and Minority Health (87.1%; 81/93); Minority Health (83.9%; 78/93); and Health Disparities (76.3%; 71/93; Table 4).

Table 4 NIH Research, Condition, and Disease Categorization (RCDC) spending category from RePORTER: Grants 2017–2022 (n = 127 terms)^a

In order to better understand the amount of monies allocated to racism in healthcare, the research team conducted a sub-analysis of the parent portfolio (93 grants), using a case study that only centered on FY 2022 (Tables 5 & 6).

Table 5 Case study: NIH funded research on racism in healthcare for FY 2022

Table 6 Case study: NIH’s funding agencies/centers, and funding dollar amounts focused on racism in healthcare – FY 2022 (n = 90)

Population focus

Nearly half (47.3%) of those studied in the 93 projects were racial and ethnic minorities (e.g., Black, Hispanic, Asian, American Indian/Alaska Native, Native Hawaiian/Pacific Islander) (Table 3). Most of the abstracts and/or public statements reported race or ethnicity (60.2%), and the largest racial and ethnic minority group studied were African American/Black (20.4%) individuals. Close to a quarter (24.7%) of the grants focused on more than one racial ethnic minority population and of these, 11.8% included both African American/Black and Hispanic/Latino/Latinx people in their studies. Of the 93 grants, most were aimed solely on patients (64.5%), followed by those on patients and providers (14%), on patients and policy (e.g., healthcare system; 8.6%), only on providers (6.5%), on the general population (3.2%) and another group that included students (3.2%; Table 3).

Publications

Overall, from these 93 grants, there were a total of 278 publications produced; and 93% of them were from researchers funded by R01s, and 83.5% were from PAs or PARs. The majority of the publications were from multi-year grants that had grant lengths of 5-years or more (64.4%) and focused on system-wide racism (57.9%); while the remaining publications were of grants with a grant length of 4-years or less (33.8%) and on racism at the individual level (29.5%), or centered on both types of racism (system-wide and individual-level; 12.6%).

Discussion

In most recent years, the recognition and acknowledgement of racism’s long history in American culture and modern medicine has shown the high economic toll it has, the unequal distribution of resources it creates and the increased health-risks and heath conditions that result from it, particularly among people of color and the Black populations [42]. In addition to being acknowledged as a public health crisis, racism has been shown to have a structural basis and to be deeply embedded in social programs and policies, which is known as structural racism [42, 43].

Different types of system-wide racism are considered upstream factors that influence health and are supported by discriminatory laws and policies, as they exacerbate already existing inequities [23, 42]. For example, a study showed structural and systemic racism as a major cause of maternal and infant health disparities; even after controlling for education and income, ethnic disparities in maternal and infant health persist, primarily due to differences in healthcare insurance coverage and access to care [29]. Confronting racism system-wide requires changing and dismantling the policies of institutions that support this form of discrimination, but also the culture of these systems [44]. Even though, measuring the impact of upstream factors may be difficult since it can take a substantial amount of time (e.g., a year or longer) to see the results [45, 46], the findings in this study showed NIH’s investment in studying structural racism, at almost 70% were on this type of racism. As identified by Hostetter & Klein [47], strategies to address system-wide racism include, using an upstream approach for hospitals and clinics to recognize ways racism affects their patients; offer training courses to providers and staff on implicit bias and antiracism principles; examine institutional policies with an antiracism and equity lens; review clinical algorithms that erroneously rely on race and limit treatment; create anonymous reporting initiatives to track and address racist behavior; and develop and implement guidelines on ways to address racist or prejudicial behaviors [47].

Racism at the system-level is equally as important as at the individual level, as they have a bi-directional relation to each other, and important upstream factors. For example, individual-level racism influences and reinforces broader systemic or structural patterns of oppression and vice versa [48]. Individual-level racism has been identified in the literature as implicit or explicit bias, which leads to discrimination against populations. Although explicit bias has declined over time, implicit bias remains [49]. Implicit bias permeates the healthcare system and affects patients in different ways, such as patient-clinician communication and rapport, trust towards providers, and/or clinical-decision making [49]. Implicit bias behaviors exhibited by healthcare providers towards their patients may partially explain health disparities among populations.

Approximately 40% of the grants did not mention the race and/or ethnicity of the population in the abstract or public statements, but the remaining studies did. Although the African American/Black population was the most studied, few grants solely focused on Asian individuals and no studies were only on Hispanic, American Indian, or Alaska Native and Pacific Islander groups. The lack of studies among these populations may create a gap in different types of research, such as applied (e.g., interventions that are culturally and linguistically appropriate), educational or population-based health disparities research.

Examples in the literature illustrate the need to study these populations. For instance, a study on Hispanic participants reported that 30% of them said healthcare providers lacked giving them the most advanced medical care; 31% were rushed by their healthcare provider during the medical visit; and 52% of those Hispanic individuals who identified as Black said, they had to speak up to get proper care from doctors compared to 31% of the Hispanic people who identified as White or 32% of those that identified as some other race [50]. Another study showed that non-Black oncologists who measured high in implicit racial bias had shorter interactions with their Black patients, resulting in less patient confidence in the recommended treatment plan [51]. Although there are no known effective evidence-based guideline to eliminate implicit bias, there are suggested ways individual providers acknowledge, identify and reduce implicit bias that include: introspection (e.g., self-reflection tools); use of different techniques (e.g., role playing and emotional regulation); and participation in bias and culturally competency trainings [52].

An aspect of racism that has been largely overlooked is internalized racism [53]. A study reported that symptoms of anxiety and discomfort were more common among Black participants who had higher degrees of internalized racism than among those who had lower levels [19]. Another study showed internalized racism to be linked to psychological distress (e.g., depression and anxiety) [16]. A review of the literature on internalized racism reported a need for more research on the experiences of different racial and ethnic groups, and on ways internalized racism intersects with other forms of internalized oppression [53]. The findings of this NIH portfolio analysis supports the literature, as it identified a gap in research since there were no NIH funded studies specifically addressing internalized racism, which is a concern as this type of racism continues to be ignored.

Financially, this portfolio analysis shows that from the FYs of 2017 to 2022, monies awarded towards racism in healthcare represent 0.07% of all NIH funding. Also, the 2022 FY case study reports that the investment for racism in healthcare was 0.25%. As NIH plays a pivotal role in supporting research that benefits the nation’s health and is committed to ending structural racism, the need to increase funding for opportunities such as internalized racism is essential [35]. Furthermore, racism is not one of the 315 RCDC spending categories created to conduct financial stewardship of NIH funding of all determinants [54, 55]. By it not being one of the categories, the amount of monies actually awarded on a yearly basis may be more and potentially are not fully captured.

Limitations

There are several limitations of this portfolio analysis. One is based on the utilization of the NIH RePORT and reviewing the abstract and public health relevance statements which are brief, limiting the amount of available information on the grant. Another limitation is due to the lack of uniformity in the abstracts; and the lack of the use of the term “racism” in the abstract. This made it difficult to fully identify if the study was examining “racism,” possibly resulting in an under-inclusion and -estimation of racism in healthcare, despite the inclusion of grants that used terms or examples such as “antiracism lens” or “(e.g., structural racism).” A third limitation is related to the publications for each funded study. Because the purpose of this portfolio analysis was not to conduct any type of analysis on the content in the abstract, public health statements or study findings, the findings on publications do not go beyond mentioning the total number per grant and in its totality. Publications were reported to show the number of scientific advances that resulted from the grants. A fourth limitation is based on the term racism and it not being included as one of the 315 RCDC categories of spending. By it not being included as one of the terms, studies may not be categorized under racism resulting in an under-estimation of R-series grants on racism. A fifth limitation of this study is that the findings may not be generalizable to other countries as only studies conducted by US-based entities and within the US territories were included in this study. Lastly, by only including R-series grants in this review, relevant information could have been unintentionally excluded, impacting the results of this review.

Conclusion

Findings from this portfolio analysis show that NIH has assigned monies toward studying racism in the healthcare settings, but also revealed the need to conduct more research on certain types of racism (i.e., internalized racism) and among all populations. This portfolio analysis also showed opportunities for NIH to: 1) request that investigators include in the abstract or public statement the population of focus; 2) the form of racism studied; and 3) broaden the RCDC spending categories to include “racism.”

As recognized by Dr. Perez-Stable, Director of NIMHD, structural racism is at the heart of many health disparities and inequities because it continues the long-standing social and health injustices [56]. For this reason, the CDC [55] recognizes that research on racism is needed and the focus needs to be farther upstream. These upstream factors, such as external determinants of health (governance and policies), need attention in order to better explain ways these determinants of health set in motion a progression of steps that many times result in health disparities [46]. Further research investigating ways these upstream factors create and impose downstream barriers, and that impact and play a role in determining these outcomes is vital [46].