Ending Unequal Treatment Strategies to Achieve Equitable Health Care and Optimal Health for All (2024) / Chapter Skim
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7 Discovery and Evidence Generation
7 Discovery and Evidence Generation
Pages 247-280
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ADVANCING HEALTH EQUITY RESEARCH Historically, biomedical research has not focused on addressing health care inequities and advancing health equity. Health disparities and health equity topics have not been prioritized compared to other research topics 247
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. HISTORICAL AND CURRENT HEALTH EQUITY RESEARCH FUNDING NIH Health Equity Research Funding From 2004 to 2023, the total direct costs for all research topic awards by NIH to improve the health of the nation totaled over $352 billion in direct costs.
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Administering Total Direct Costs Number of Total Direct Percentage of Institute or for Health Equity Health Equity Costs for All Topics Budget Awarded Center Related Awards Projects Awards to Health Equity NCI $3,633,196,443 7,036 $50,726,900,420 7.2 NEI $27,120,902 85 $8,381,334,414 0.3 NHLBI $1,051,514,037 2,799 $39,092,240,320 2.7 NHGRI $203,935,010 409 $6,373,526,235 3.2 NIA $1,327,904,762 2,595 $24,210,131,963 5.5 NIAAA $182,132,345 679 $5,476,135,533 3.3 NIAID $258,907,649 408 $49,344,168,010 0.5 NIAMS $46,012,673 205 $6,441,219,915 0.7 NIBIB $67,322,688 88 $4,521,320,123 1.5 NICHD $671,550,878 2,519 $15,402,249,730 4.4 NIDCD $40,502,284 148 $5,073,980,391 0.8 NIDCR $231,472,970 575 $4,815,559,200 4.8 NIDDK $429,132,793 1,578 $24,483,467,647 1.8 NIDA $596,265,144 1,763 $14,274,619,347 4.2 NIEHS $302,245,040 702 $2,692,726,097 11.2 NIGMS $1,023,448,278 1,596 $33,506,241,573 3.1 NIMH $578,335,226 1,660 $19,560,578,914 3.0 NIMHD $2,728,565,462 4,782 $3,870,222,116 70.5 NINDS $171,692,885 296 $22,640,507,803 0.8 NINR $244,052,667 1,079 $1,855,582,023 13.2 NLM $51,917,677 265 $1,036,060,501 5.0 FIC $25,809,223 192 $1,103,031,702 2.3 NCATS $1,043,275,287 473 $5,633,108,052 18.5 NCCIH $30,549,993 163 $1,587,586,575 1.9 Total $14,966,862,316 32,095 $352,102,498,604 4.3 NOTES: The health equity funding in this table includes funding for health-equity-based research, program project/center, and resource grants. NCI: National Cancer Institute; NEI: National Eye Institute; NHLBI: National Heart: Lung, and Blood Institute; NHGRI: National Human Genome Research Institute; NIA: National Institute of Aging; NIAAA: National Institute on Alcohol Abuse and Alcoholism; NIAID: National Institute of Allergy and Infectious Diseases; NIAMS: National Institute of Arthritis and Musculoskeletal and Skin Diseases; NIBIB: National Institute of Biomedical Imaging and Bioengineering; NICHD: Eunice Kennedy Shriver National Institute of Child Health and Human Development; NICDC: National Institute on Deafness and Other Communication Disorders; NIDCR: National Institute of Dental and Craniofacial Research; NIDDK: National Institute of Diabetes and Digestive and Kidney Diseases; NIDA: National Institute on Drug Abuse; NIEHS: National Institute of Environmental Health Sciences; NIGMS: National Institute of General Medical Sciences; NIMH: National Institute of Mental Health; NIMHD: National Institute on Minority Health and Health Disparities; NINDS: National Institute of Neurological Disorders and Stroke; NINR: National Institute of Nursing Research; NLM: National Library of Medicine; FIC: Fogarty International Center; NCATS: National Center for Advancing Translational Sciences; NCCIH: National Center For Complementary and Alternative Medicine.
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, that leads scientific research to improve minority health and eliminate health disparities,2 funded over 4,700 projects at nearly $2.8 billion. Of the ICs and offices with the highest percentages of these health equity awards, NIMHD, National Center for Advancing Translational Sciences, and the National Institute on Nursing Research fund a larger proportion 1 RePORTER is a dynamic database that is updated weekly.
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NOTE: The health equity funding represented in this figure includes funding for health equity-based research projects (R) , research program projects and centers (P)
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. 5 See https://data.hrsa.gov/topics/grants (accessed March 29, 2024)
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. Unclear Standards and Criteria for Defining the Health Equity Research Workforce The COVID-19 pandemic shone a bright light on racial and ethnic health inequities (NASHP, 2021)
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In the first three rounds of awards, the program issued more than $150 million.7 Although the program is not solely focused on health equity, several awardees have identified that as a theme for faculty recruitment. Training the Future Health Equity Research Workforce Many colleges, universities, and research institutions lack the resources and infrastructure required to train researchers in the conceptual models, frameworks, study design, engagement strategies, and analytic approaches required to conduct health equity research (Lett et al., 2022)
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In addition, health equity researchers need training and experience in several foundational areas: • understanding and applying social determinants frameworks and models to research study design, • using research techniques and tools that measure inequities and social disadvantages • developing interdisciplinary or transdisciplinary research collabora tions that engage and partner with communities affected by health inequities, and • developing approaches that center the voices and needs of margin alized and minoritized groups. Fundamental Methods to Conducting Health Equity Research Focus on Social Drivers As discussed throughout this report, a large body of research describes the inequitable distribution of health and health care outcomes across the U.S.
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However, it has become increasingly evident that the persistent health and health care inequities are driven by dynamic, multilevel factors that operate through social, political, economic, behavioral, and biological mechanisms. To more effectively address these multilevel and multidimensional mechanisms, collaborative health equity research across a wide range of disciplines is needed; teams need to include individuals from diverse scientific backgrounds and be adept at partnering with communities using mutually respectful, bidirectional strategies.
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. 10 See https://mhrt.sonhs.miami.edu/ (accessed March 29, 2024)
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Public Health13 experience HEALTH EQUITY RESEARCH DATA Current State of the Data Inaccurate and Incomplete Race, Ethnicity and Tribal Affiliation Data The U.S. Office of Management and Budget (OMB)
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. The 2023 NASEM report Federal Policy to Advance Racial, Ethnic, and Tribal Health Equity notes that omitting these data "perpetuates inequities 15 See https://www.federalregister.gov/public-inspection/2024-06469/statistical-policy-directive no-15-standards-for-maintaining-collecting-and-presenting-federal-data (accessed March 29, 2024)
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A respondent who reports being both White and Black or African American would be categorized as both "White alone or in combination" and "Black or African American alone or in combination." A 2022 OMB Memorandum on flexibilities and best practices for implementing the current standard notes that the best approach in a given situation depends on the objective of analyses, sample size, and whether prior reporting approaches need to be maintained to assess temporal trends.17 16 See https://www.whitehouse.gov/wp-content/uploads/2022/07/Flexibilities-and-Best-Practices Under-SPD-15.pdf (accessed March 29, 2024)
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Datasets Capturing Social Determinants, Drivers, and Needs Data As highlighted throughout this report, understanding and addressing social factors is critical to addressing racial and ethnic health and health care inequities. National Academies reports have recommended systematically collecting social, economic, and historical data to provide context and understanding for these inequities.
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. 21 See https://www.macpac.gov/wp-content/uploads/2022/06/Chapter-1-A-New-Medicaid Access-Monitoring-System.pdf (accessed March 29, 2024)
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No Continued Support to Build and Sustain Long-Term Relationships with Community Partners When health equity researchers are funded by NIH and others, they bring the same indirect rate to their academic institution as scientists funded on other areas of science; yet there are often no tangible ways to see and measure the indirect investments being made to provide ample health equity research infrastructure. The resources supporting the establishment of community-partnered and -centered initiatives across the academic enterprise are also widely variable.
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. Lack of Diversity in Research Participation In 2022, the National Academies Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups consensus report documented that investments in clinical trials have contributed significantly to treating and preventing diseases to improve the health and well-being of the nation (NASEM, 2022)
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. Strategies to Improve Health Equity Research Infrastructure Invest in Community Engagement A robust evidence base demonstrates that CBPR approaches are effective in increasing clinical research participation and retention.
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to assess and report the representativeness of clinical trials as one measure of sound research design it requires for the protection of human subjects. • The Centers for Medicare and Medicaid Services (CMS)
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• Leaders and faculty of academic medical centers and large health systems should recognize research and professional efforts to advance community-engaged scholarship and other research to enhance the representativeness of clinical trials as areas of excel lence for promotion or tenure. • Leaders of academic medical centers and large health systems should provide training in community engagement and in prin ciples of diversity, equity, and inclusion for all study investigators, research grants administration, and IRB staff as a part of the required training for any persons engaging in research involving human subjects.
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The CBPR group received education on urinary incontinence by Spanish-speaking research staff that adapted and implemented a randomized clinical trial multimodal rehabilitation intervention for the Casa Iris community center staff. In contrast, the control group received fliers, a study website, and letters and phone reminders.
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However, PhotoVoice was viewed as an innovative way to identify community issues and create sustainable partnerships in the community that can be leveraged for social action. MOVING HEALTH EQUITY RESEARCH FROM OBSERVATIONS TO INTERVENTIONS Although the literature has many studies documenting differential outcomes and treatment of racially and ethnically minoritized groups in health care settings, few studies have tested interventions to improve these outcomes (Agurs-Collins et al., 2019; Alegría et al., 2021)
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. Broadening the scope of health equity research to include assessing the factors leading to successful implementation and sustainment of interventions may help eliminate inequities (Cooper et al., 2021; McNulty et al., 2019; Proctor et al., 2023; Shelton et al., 2021)
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Centering Equity for Emerging Health Care Technologies As described in Chapter 6, technological innovations have significantly changed the health care delivery landscape in the past 20 years. It is important to thoroughly consider the implications for racial and ethnic health care inequities.
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CHAPTER SUMMARY Important shifts in funding and conduct of health equity research have occurred in the 20 years since Unequal Treatment. Yet, progress has been slow and incremental due to historically underfunded health equity research projects, programs, and investigators; exclusion of racially and ethnically minoritized groups from research; incomplete and inaccurate race, ethnicity, and SDOH data; and inadequate infrastructure and partnerships to rigorously conduct this research and translate findings into policies and practice.
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• Implementation science research should prioritize studying evi dence that could impact policy (e.g., discovering the most effective implementation strategies to support community health workers in reducing racial and ethnic health care inequities could impact policies for certifying and funding them)
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A comprehensive review of the NIH portfolio finds that health disparity and health equity research account for only 4.3 percent of direct costs of NIH awards between 2012 and 2023. Although funding trends have increased in recent years, health equity and health inequities research funding are not evenly distributed across NIH Institutes and Centers.
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https://www.ey.com/en_us/health/america-s-health equity-investment-marginal-return (accessed March 29, 2024)
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2021. Addressing demographic disparities in clinical trials.
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Population Is Much More Multiracial. https://www.census.gov/li brary/stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-population much-more-multiracial.html (accessed March 29, 2024)
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2022. Improving representation in clinical trials and research: Building research equity for women and underrepresented groups.
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racial/ethnic health disparities. Population Research and Policy Review 40:9-31.
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2023. The measurement of racism in health inequities research.
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