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OneFlorida 数据信托:一个集中的、具有全州范围的转化研究数据基础设施。

The OneFlorida Data Trust: a centralized, translational research data infrastructure of statewide scope.

机构信息

Department of Health Outcomes & Biomedical Informatics, University of Florida, Gainesville, Florida, USA.

Bond Community Health Center, Tallahassee, Florida, USA.

出版信息

J Am Med Inform Assoc. 2022 Mar 15;29(4):686-693. doi: 10.1093/jamia/ocab221.

Abstract

The OneFlorida Data Trust is a centralized research patient data repository created and managed by the OneFlorida Clinical Research Consortium ("OneFlorida"). It comprises structured electronic health record (EHR), administrative claims, tumor registry, death, and other data on 17.2 million individuals who received healthcare in Florida between January 2012 and the present. Ten healthcare systems in Miami, Orlando, Tampa, Jacksonville, Tallahassee, Gainesville, and rural areas of Florida contribute EHR data, covering the major metropolitan regions in Florida. Deduplication of patients is accomplished via privacy-preserving entity resolution (precision 0.97-0.99, recall 0.75), thereby linking patients' EHR, claims, and death data. Another unique feature is the establishment of mother-baby relationships via Florida vital statistics data. Research usage has been significant, including major studies launched in the National Patient-Centered Clinical Research Network ("PCORnet"), where OneFlorida is 1 of 9 clinical research networks. The Data Trust's robust, centralized, statewide data are a valuable and relatively unique research resource.

摘要

OneFlorida 数据信托是由 OneFlorida 临床研究联盟(“OneFlorida”)创建和管理的集中式研究患者数据存储库。它包含结构化电子健康记录(EHR)、管理索赔、肿瘤登记、死亡和其他数据,涵盖了 2012 年 1 月至现在在佛罗里达州接受医疗保健的 1720 万人。迈阿密、奥兰多、坦帕、杰克逊维尔、塔拉哈西、盖恩斯维尔和佛罗里达州农村地区的 10 家医疗系统提供 EHR 数据,涵盖了佛罗里达州的主要大都市地区。通过隐私保护实体解析(精度 0.97-0.99,召回率 0.75)实现患者去重,从而链接患者的 EHR、索赔和死亡数据。另一个独特的特点是通过佛罗里达州生命统计数据建立母婴关系。研究使用率很高,包括在国家以患者为中心的临床研究网络(“PCORnet”)中启动的重大研究,其中 OneFlorida 是 9 个临床研究网络之一。该数据信托的强大、集中、全州范围的数据是一种有价值且相对独特的研究资源。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/81e4/8922180/2c867bc407f3/ocab221f1.jpg

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