In the 30-plus years since the NIH launched the first Office of Minority Health Research (now known as the National Institute on Minority Health and Health Disparities (NIMHD) since 2010), their initiatives have improved inequities in health. For example, efforts by researchers, advocates, and stakeholders reduced the mortality gap in between Black and White people in the US by about half from 1999 to 2015, narrowing from 33% to 16%.
Despite improvements, health inequities still exist. These include shorter life expectancy, higher rates of cardiovascular disease, cancer, diabetes, infant mortality, stroke, cognitive impairment, asthma, sexually transmitted infections, dental diseases, and differences in prevalence and outcomes of mental illness.
NIMHD reflects the NIH's growth in addressing health disparities
The NIMHD's history since 1990 is steeped in leadership and initiatives to “bring attention to the unequal burden of illness and death experienced by racial and ethnic minorities, rural and poor populations in this country." With a FY 2023 approved budget of $659.8 million (Figure 1), the NIMHD carries out five main functions:
Conduct and support research on minority health and health disparities.
- Promote and support the training of a diverse research workforce.
- Translate and disseminate research discoveries.
- Foster innovative collaborations and partnerships.
- Plan, coordinate, review, and evaluate minority health and health disparities research and activities of the National Institutes of Health (NIH).
In addition to research, education, and advocacy, the NIH impacts new legislation. Between 1993 to 2010, three laws were enacted to boost these efforts.
Figure 1: NIH funding history 2017-2023
Bigger NIH budget supports new programs, data, and technologies to support long-term research goals
The NIH's Minority Health and Health Disparities Strategic Plan 2021-2025 outlines the ambitious goals set for the NIMHD as shown in Figure 2.
Figure 2: NIH's framework for the 2021-2025 Minority Health and Health Disparities Strategic Plan
The plan highlights the need for rigorous scientific approaches to minority health and health disparities, “building on decades of studies addressing social inequality and health, behavioral epidemiology, and access to quality health care—is now increasingly being met by an expanding array of biological and data science tools that help us understand health and disease mechanisms."
Two specific initiatives are foundational to NIMHD's current and future strategic plans to improve diversity in medical research and eliminate structural racism and discrimination (SRD) in clinical research design, recruiting, and analysis. These initiatives are detailed below.
UNITE: NIH's equity and diversity in biomedical research program
Announced in early 2021, UNITE brings together professionals across the NIH Institutes and Centers to “establish an equitable and civil culture within the biomedical research enterprise and reduce barriers to racial equity in the biomedical research workforce." In addition to research that identifies opportunities in the field, the program recommends, develops, and implements strategies to increase inclusivity and diversity in science.
According to Bloomberg Law, “While the NIH has policies dating back nearly three decades to increase the diverse representation in both the research and the scientists who conduct it, it's the first time the agency has used the power of its $45 billion purse to tackle structural racism head on."
Through a focus on internal workforce, external workforce, and health disparity research, UNITE established four priority areas in summer, 2022:
- Elevate health disparities and minority health research across institutes and centers.
- Promote equity in the NIH-supported biomedical research ecosystem.
- Promote equity in the internal NIH workforce.
- Improve the accuracy and transparency of racial and ethnic equity data.
UNITE's goal is to address structural racism and discrimination in medical research
Born from the health inequities exacerbated by the COVID-19 pandemic, the murder of Minneapolis resident George Floyd in May 2020, and the killing of six Asian women in Atlanta in March 2021, UNITE is poised to create a new need for engagement through diversity to change the way medical research is conducted and viewed. This is supported by a survey conducted by the Pew Research Center that discovered that Black Americans have mixed views of medical researchers. Most respondents trust professionals' ability to carry out science, however, many remain wary of the potential for misconduct or inabilities to admit errors in research.
Programs to address these priorities include observational research projects on SRD, enhanced harassment reporting, and career opportunities for underrepresented groups from diverse backgrounds. These include opportunities for those underrepresented in biomedical research and outreach to the K–12 Science, Technology, Engineering, and Math (STEM) community.
Additionally, the NIH has collected more than 1,100 stakeholder responses on how the organization might advance diversity within the biomedical and behavioral research workforce and expand research to eliminate or lessen health disparities and inequities. The external listening sessions succeeded in gathering input for translation into new programs and initiatives.
All of Us: NIH's national data platform
All of Us is the NIH's national data platform geared to collect genomic, medical, and health information from underrepresented populations, freely offering the data to the public and researchers. This program collaborates with the NIMHD and seeks to gather data on one million Americans through a network of healthcare organization partnerships. These researchers, healthcare providers, technology experts, community partners, and US adults are working together to develop a balanced view of individual and population health. Their focus includes “the rich diversity of America, including volunteers of many races and ethnicities, age groups, geographic regions, gender identities, sexual orientations, and health statuses."
While other programs engage individuals as “subjects," the All of Us platform goes beyond a biodata source for research to engage participants more deeply. Other large research programs collect limited types of samples or data. This national initiative gathers blood, urine, and saliva samples; physical measurements; electronic health records; health histories, family medical histories, lifestyle details, and community information along with wearable data, where available. In addition to a growing number of centers shown in Figure 3, the All of Us team works with partners to open temporary or “pop-up" locations when patterns emerge that suggest a need to gather additional information from more volunteers.
Figure 3: Map indicating locations of many partner centers
Since its start in 2018, All of Us has uncovered and published research highlights, including findings around the link between birthplace and cancer risk, and using the data to improve prediction of hospital readmission from sepsis. Volunteers can receive results from any testing, including information about traits and ancestry, risks for certain diseases, or the likelihood of some drugs being harmful or helpful.
NIH national data platform has goal in sight
A special edition of the New England Journal of Medicine touted that as of July 2019, more than 175,000 participants had contributed biospecimens to the All of Us biobank. More importantly, 80% of the participants were from historically underrepresented groups in biomedical research. Further, they collected EHR data on more than 112,000 participants from 34 sites nationally.
As of October 2022, the number of participants in the All of Us program had grown to over 540,000 and over 400,000 biosamples, and EHR data from 325,000 individuals. During NIMH Director's Innovation Speakers Series, Joshua Denny, MD, CEO of the NIH All of Us Research Program, shared that they have nearly a half a billion data points, not including Fitbit data, and over 2,600 research projects on that platform. Plans are in place to expand into pediatric data collection soon.
Accessing NIMHD's wealth of health equity resources
These two programs further support the work of the NIMHD. Through increased NIH funding and innovative programs, centers like the NIMHD can help make clinical research more diverse and accurate. These efforts can also create a more diverse industry workforce and improve personalized medicine for all people and reduce health inequities.
Tapping into NIH/NIMHD resources with outside support to use them effectively
Payers, providers, state health departments, and public health organizations can freely access invaluable resources for efforts to reduce health disparities, including research funding opportunities; education, research, and funding around ending structural racism and discrimination.
RTI Health Advance is at-the-ready to help healthcare, state, and community organizations identify the best resources, utilize comprehensive data sources, and glean profound insights using data science. Connect with our experts to learn more and how we can support activating those insights into health equity programs, digital health tools, and population health initiatives.
Learn about The NIH's Minority Health and Health Disparities Strategic Plan and other ways the NIH is working to battle health inequities in 2023 & beyond.