Reviewing and Advocating for Data Disaggregation in Aging-Related Health Research: NIA Grants and Recommendations for Equity

Federal minimum standards for collecting and reporting race and ethnicity data implicitly categorize diverse individuals into broad, monolithic categories. Despite advancements in policy and practice and calls for inclusive research, data equity remains a significant issue in aging-related health research. Racially and ethnically diverse older adults are underrepresented in health research and rarely disaggregated by ethnicity in data collection, analysis, and reporting of aging-related health outcomes. Data disaggregation offers a promising approach to advancing data equity in aging research. We searched the National Institute on Health RePORT Expenditures and Results (NIH RePORTER) database to identify extramural National Institute on Aging (NIA) grants from 1985 to 2024 that proposed disaggregating race and ethnicity data for aging-related research. We found only 12 NIA-funded awards, visually demonstrating how understudied data disaggregation is within the field of aging. Most disaggregation-focused grants were awarded from 2015 onward (92%), with 42% being R01 grants. Enhancing methodological rigor in demographic data collection and reporting reflective of the diversifying aging population is crucial for data equity. We conclude with recommendations to advance aging health research and highlight considerations and ethical issues for data disaggregation for historically surveilled racial and ethnic minoritized communities.