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

10.2196/14591 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e14591
Author(s):  
Karen Wang ◽  
Holly Grossetta Nardini ◽  
Lori Post ◽  
Todd Edwards ◽  
Marcella Nunez-Smith ◽  
...  

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.

2019 ◽  
Author(s):  
Karen Wang ◽  
Holly Grossetta Nardini ◽  
Lori Post ◽  
Todd Edwards ◽  
Marcella Nunez-Smith ◽  
...  

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.


2019 ◽  
Vol 29 (4) ◽  
pp. 535-544
Author(s):  
Erica S. Spatz ◽  
Josefa L. Martinez-Brockman ◽  
Baylah Tessier-Sherman ◽  
Bobak Mortazavi ◽  
Brita Roy ◽  
...  

Objective: To describe the rationale and design of a prospective study of ambula­tory blood pressure measurement (ABPM) combined with measurement of contextual factors to identify hypertensive phenotypes in a Caribbean population with high rates of HTN and cardiovascular disease.Design: Prospective, multi-center sub-study.Setting: Eastern Caribbean Health Outcomes Research Network Cohort (ECHORN) Study, with study sites in Puerto Rico, the US Virgin Islands, Trinidad and Tobago, and Barbados.Participants: Community-residing adults without a diagnosis of HTN and not taking antihypertensive medication.Intervention: Ambulatory BP patterns are assessed using 24-hour ABPM. Contextual factors are assessed with: ecological mo­mentary assessment (7-item survey of expe­riences, exposures and responses associated with daytime BP measurements); actigra­phy (capturing physical activity and sleep quality); and self-report surveys (assessing physical and social health, environmental and social stressors and supports).Main Outcome Measures: Phenotypes of contextual factors associated with hyperten­sive BP patterns (sustained HTN, masked HTN, and nocturnal non-dipping)Methods and Results: This study will enroll 500 participants; assessments of blood pressure and contextual factors will be conducted during Waves 2 and 3 of the ECHORN parent study, occurring 2 years apart. In Wave 2, we will assess the associa­tion between contextual factors and ABPM patterns. Using advanced analytic clustering methods, we will identify phenotypes of contextual factors associated with hyper­tensive ABPM patterns. We will then test the stability of these phenotypes and their ability to predict change in ABPM patterns between Waves 2 and 3.Conclusions: Assessment of ABPM, and the contextual factors influencing ABPM, can identify unique phenotypes of HTN, which can then be used to develop more preci­sion-based approaches to the prevention, detection and treatment of HTN in high-risk populations.Ethn Dis. 2019;29(4):535-544; doi:10.18865/ed.29.4.535


2018 ◽  
Vol 81 (2) ◽  
pp. 109-124 ◽  
Author(s):  
JL Pinckney ◽  
C Tomas ◽  
DI Greenfield ◽  
K Reale-Munroe ◽  
B Castillo ◽  
...  

2021 ◽  
Vol 6 (2) ◽  
pp. 66
Author(s):  
S. Grace Prakalapakorn ◽  
Lucas Bonafede ◽  
Linda Lawrence ◽  
Daniel Lattin ◽  
Nicola Kim ◽  
...  

Among children born with laboratory-confirmed Zika virus (ZIKV) infection, visual impairment (VI) can occur despite normal ocular structure. The objective of this report is to describe ocular findings and visual function among children examined during the Department of Health Zika Health Brigade (ZHB) in the United States Virgin Islands in March 2018. This analysis is based on a retrospective chart review of children eligible to participate in the ZHB (i.e., part of the US Zika Pregnancy and Infant Registry) and who were examined by ophthalmologists. Eighty-eight children attended the ZHB. This report includes 81 children [48 (59.3%) males] whose charts were located [average gestational age = 37.6 weeks (range: 27.6–41.3) and average adjusted age at examination = 9.1 months (range: 0.9–21.9)]. Of those examined, 5/81 (6.2%) had microcephaly at birth, 2/81 (2.5%) had a structural eye abnormality, and 19/72 (26.4%) had VI. Among children with normal ocular structure and neurologic examination, 13/51 (25.5%) had VI. Despite a low incidence of abnormal ocular structure and microcephaly, about a quarter of children examined had VI. Our findings emphasize that ophthalmological examinations should be performed in all children with suspicion for antenatal ZIKV infection, even children with normal ocular structure and neurologic examination.


Toxins ◽  
2021 ◽  
Vol 13 (6) ◽  
pp. 413
Author(s):  
Justin D. Liefer ◽  
Mindy L. Richlen ◽  
Tyler B. Smith ◽  
Jennifer L. DeBose ◽  
Yixiao Xu ◽  
...  

Ciguatera poisoning (CP) poses a significant threat to ecosystem services and fishery resources in coastal communities. The CP-causative ciguatoxins (CTXs) are produced by benthic dinoflagellates including Gambierdiscus and Fukuyoa spp., and enter reef food webs via grazing on macroalgal substrates. In this study, we report on a 3-year monthly time series in St. Thomas, US Virgin Islands where Gambierdiscus spp. abundance and Caribbean-CTX toxicity in benthic samples were compared to key environmental factors, including temperature, salinity, nutrients, benthic cover, and physical data. We found that peak Gambierdiscus abundance occurred in summer while CTX-specific toxicity peaked in cooler months (Feb–May) when the mean water temperatures were approximately 26–28 °C. These trends were most evident at deeper offshore sites where macroalgal cover was highest year-round. Other environmental parameters were not correlated with the CTX variability observed over time. The asynchrony between Gambierdiscus spp. abundance and toxicity reflects potential differences in toxin cell quotas among Gambierdiscus species with concomitant variability in their abundances throughout the year. These results have significant implications for monitoring and management of benthic harmful algal blooms and highlights potential seasonal and highly-localized pulses in reef toxin loads that may be transferred to higher trophic levels.


2015 ◽  
Vol 3 ◽  
pp. 242-255 ◽  
Author(s):  
Katherine E. Wirt ◽  
Pamela Hallock ◽  
David Palandro ◽  
Kathleen Semon Lunz

2014 ◽  
Vol 97 (3) ◽  
pp. 1099-1103 ◽  
Author(s):  
James K. Wetterer ◽  
Olasee Davis ◽  
Joe R. Williamson

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