Challenges with quality of race and ethnicity data in observational databases
Challenges with quality of race and ethnicity data in observational databases
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DOI：
10.1093/jamia/ocz113
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发表时间：
2019-08-01
影响因子：
6.4
通讯作者：
Vawdrey, David K.
中科院分区：
文献类型：
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作者：
Polubriaginof, Fernanda C. G.;Ryan, Patrick;Vawdrey, David K.
目的：我们试图评估观察性健康数据库（包括电子健康记录（EHR））中种族和民族信息的质量，并提出患者自我记录作为改进策略。材料和方法：我们评估了美国大型观察性健康数据库中人种和种族信息的完整性（医疗保健成本和利用项目和Optum实验室），并在纽约市的一个单一的医疗保健系统服务于种族和民族多样化的人口。我们将通过行政程序收集的种族和民族数据与受访者通过纸质调查（国家健康和营养检查调查和医院消费者对医疗保健提供者和系统的评估）直接记录的数据进行了比较。受访者记录的数据被认为是收集种族和民族information.Results的黄金标准：在1.6亿患者的医疗成本和利用项目和Optum实验室数据集，种族或民族是未知的25%。在纽约市单一医疗保健系统的240万患者中，57%的患者的种族或民族未知。然而，当患者直接记录他们的种族和民族，86%提供了有临床意义的信息，和66%的患者报告的信息是不一致的EHR.Discussion：种族和民族数据是至关重要的，以支持精准医学的举措，并确定医疗差异，但是，在观察数据库中的信息的质量是令人担忧的。患者自我记录，通过使用面向患者的工具，可以大大提高信息的质量，同时参与患者在他们的health.Conclusions：患者自我记录可以提高种族和民族信息的完整性。
Objective: We sought to assess the quality of race and ethnicity information in observational health databases, including electronic health records (EHRs), and to propose patient self-recording as an improvement strategy.Materials and Methods: We assessed completeness of race and ethnicity information in large observational health databases in the United States (Healthcare Cost and Utilization Project and Optum Labs), and at a single healthcare system in New York City serving a racially and ethnically diverse population. We compared race and ethnicity data collected via administrative processes with data recorded directly by respondents via paper surveys (National Health and Nutrition Examination Survey and Hospital Consumer Assessment of Healthcare Providers and Systems). Respondent-recorded data were considered the gold standard for the collection of race and ethnicity information.Results: Among the 160 million patients from the Healthcare Cost and Utilization Project and Optum Labs datasets, race or ethnicity was unknown for 25%. Among the 2.4 million patients in the single New York City healthcare system's EHR, race or ethnicity was unknown for 57%. However, when patients directly recorded their race and ethnicity, 86% provided clinically meaningful information, and 66% of patients reported information that was discrepant with the EHR.Discussion: Race and ethnicity data are critical to support precision medicine initiatives and to determine healthcare disparities; however, the quality of this information in observational databases is concerning. Patient self-recording through the use of patient-facing tools can substantially increase the quality of the information while engaging patients in their health.Conclusions: Patient self-recording may improve the completeness of race and ethnicity information.