May 14, 2024

Enhancing Transparency and Accountability for NIH Minority Health and Health Disparities Research

UNITE Co-Chairs’ Corner

A book and blocks that says Research and Funding

The UNITE N Committee is charged with enhancing the transparency, accountability, and equitable conduct of NIH-supported health disparities (HD) and minority health (MH) research. The goal is to mitigate the impact of structural racism on health, improve the health of racial and ethnic minority populations, and promote health equity for all.

In 2021, the UNITE N Committee established the UNITE N Data Working Group to enact part of the UNITE N Committee charge. The Working Group focused on assessing the data available to characterize the HD/MH research portfolios and to facilitate analyses of HD/MH grant applications and awards. Once established, the Working Group evaluated NIH’s previous approach to capturing and reporting investments in HD/MH research, with an eye toward enhancing accuracy, transparency, and accessibility.

Definitions:

Health disparities are preventable differences in health that adversely affect disadvantaged populations. Health disparities research examines the influence of individual behavior and biology, health care, physical and interpersonal environment, adverse social determinants, and other underlying mechanisms that lead to modifiable differences in health outcomes.
Minority health refers to the distinctive health characteristics and attributes of racial and/or ethnic minority groups that can be socially disadvantaged due in part to potential discriminatory acts. Minority health research is the scientific investigation of distinctive health characteristics and attributes of minority racial and/or ethnic groups who are usually underrepresented in biomedical research to understand health outcomes in these populations. Racial and ethnic minority populations are defined by the federal government as American Indian or Alaska Native, Asian, Black or African American, Latino or Hispanic, Native Hawaiian or Pacific Islander persons.

Since 2009, NIH has relied on the Research, Condition, and Disease Categorization (RCDC) reporting system to inform the public about how tax dollars are spent to support biomedical research. RCDC provides estimates of total NIH funding for more than 300 categories of diseases, conditions, or research areas. While almost all RCDC categories use an automated process to identify relevant applications and awards, some categories use a manual process until analyses to address unique reporting requirements for these categories can be completed and they can be converted to automated ones. Until 2022, the Health Disparities and Minority Health RCDC categories relied on manual coding.

After extensive analysis and consideration of alternative strategies to characterize the research of HD/MH portfolios, the N Data Working Group, in collaboration with the National Institute on Minority Health and Health Disparities (NIMHD), RCDC staff in the Office of Extramural Research (OER), and other NIH colleagues, recommended converting the manual HD/MH categories into automated categories. Shifting to automated categories offers increased rigor, accuracy, and transparency by:

applying the same classification methodology across all applications and awards, eliminating inconsistencies inherent with individual interpretation of coding standards;
capturing unfunded applications for internal purposes, which was too burdensome for manual assessment, thereby enhancing NIH’s analytical capabilities to assess application rates, award rates, and other metrics; and
enhancing NIH’s ability to track progress of the NIH Minority Health and Health Disparities Strategic Plan goals.

NIH is pleased to share that it has converted the two manual categories of Health Disparities and Minority Health into five automated categories that better distinguish research funding from workforce diversity and capacity building funding (the previous manual HD/MH categories included funding for HD/MH research as well as workforce diversity and capacity building):

Health Disparities Research
Racial and Ethnic Minority Health Research
Health Disparities and Racial or Ethnic Minority Health Research
- This category is the union of “Racial and Ethnic Minority Health Research” and “Health Disparities Research” with duplicate projects removed. Most research projects in the “Racial and Ethnic Minority Health Research” category are also represented in the “Health Disparities Research” category since the projects involve both research areas.
Workforce Diversity and Outreach
Building Research Capacity at Institutions with Limited NIH Funding

These new categories will be used to report NIH funding in these areas beginning with fiscal year 2023 and moving forward. Importantly, actual total funding numbers have not changed: only the reporting methodology has been revised to increase rigor, accuracy, and transparency.

NIH has a longstanding commitment to supporting health disparities research, minority health research, workforce diversity and outreach, and research capacity building at institutions with limited NIH funding. This commitment is what prompted NIH to improve its reporting methodologies.

Our goal is to continuously improve the accuracy and transparency of reporting NIH investments in these critical areas and to better track progress toward the NIH Minority Health and Health Disparities Strategic Plan goals, which include mitigating the impact of structural racism on health and promoting health equity for all.