TY - JOUR
T1 - Information loss in harmonizing granular race and ethnicity data
T2 - Descriptive study of standards
AU - Wang, Karen
AU - Nardini, Holly Grossetta
AU - Post, Lori
AU - Edwards, Todd
AU - Nunez-Smith, Marcella
AU - Brandt, Cynthia
N1 - Funding Information:
Drs KW, CB, and MNS are supported in part by U54MD010711 from the National Institute on Minority Health and Health Disparities. The funder had no role in the design or conduct of the manuscript. Views expressed are those of the authors and do not represent those of the funding source.
Publisher Copyright:
© 2020 Karen Wang.
PY - 2020/7
Y1 - 2020/7
N2 - 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.
AB - 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.
KW - Continental population groups
KW - Data standards
KW - Demography
KW - Health status disparities
KW - Multiethnic groups
KW - Multiracial populations
KW - Race factors
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U2 - 10.2196/14591
DO - 10.2196/14591
M3 - Review article
C2 - 32706693
AN - SCOPUS:85088682068
VL - 22
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
SN - 1439-4456
IS - 7
M1 - e14591
ER -