Information Loss in Harmonizing Granular Race and Ethnicity Data: Descriptive Study of Standards

Wang, Karen; Nardini, Holly Grossetta; Post, Lori; Edwards, Todd; Nunez-Smith, Marcella; Brandt, Cynthia
Journal of Medical Internet Research

Background: Data standards for race and ethnicity have significant implications for health equity research.
Objective: We aim to describe a challenge encountered when working with a multiple–race and ethnicity assessment in the Eastern Caribbean Health Outcomes Research Network (ECHORN), a research collaborative of Barbados, Puerto Rico, Trinidad and Tobago, and the US Virgin Islands.
Methods: We examined the data standards guiding harmonization of race and ethnicity data for multiracial and multiethnic populations, using the Office of Management and Budget (OMB) Statistical Policy Directive No. 15.
Results: Of 1211 participants in the ECHORN cohort study, 901 (74.40%) selected 1 racial category. Of those that selected 1 category, 13.0% (117/901) selected Caribbean; 6.4% (58/901), Puerto Rican or Boricua; and 13.5% (122/901), the mixed or multiracial category. A total of 17.84% (216/1211) of participants selected 2 or more categories, with 15.19% (184/1211) selecting 2 categories and 2.64% (32/1211) selecting 3 or more categories. With aggregation of ECHORN data into OMB categories, 27.91% (338/1211) of the participants can be placed in the “more than one race” category.
Conclusions: This analysis exposes the fundamental informatics challenges that current race and ethnicity data standards present to meaningful collection, organization, and dissemination of granular data about subgroup populations in diverse and marginalized communities. Current standards should reflect the science of measuring race and ethnicity and the need for multidisciplinary teams to improve evolving standards throughout the data life cycle.