Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: May 3, 2019
Open Peer Review Period: May 6, 2019 - Jul 1, 2019
Date Accepted: Mar 12, 2020
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Information Loss in Harmonizing Granular Race and Ethnicity Data: Descriptive Study of Standards
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.
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.