临床数据质量：从数据生命周期角度看
Clinical data quality: a data life cycle perspective.
作者信息
Weng Chunhua
机构信息
Department of Biomedical Informatics, Columbia University, New York, NY, USA.
出版信息
Biostat Epidemiol. 2020;4(1):6-14. doi: 10.1080/24709360.2019.1572344. Epub 2019 Feb 23.
Abstract
Clinical data is the staple of modern learning health systems. It promises to accelerate biomedical discovery and improves the efficiency of clinical and translational research but is also fraught with significant data quality issues. This paper aims to provide a life cycle perspective of clinical data quality issues along with recommendations for establishing appropriate expectations for research based on real-world clinical data and best practices for reusing clinical data as a secondary data source.
摘要
临床数据是现代学习型健康系统的支柱。它有望加速生物医学发现并提高临床和转化研究的效率，但也充满了重大的数据质量问题。本文旨在从生命周期的角度审视临床数据质量问题，并就基于真实世界临床数据的研究建立适当预期以及将临床数据作为二次数据源进行重用的最佳实践提出建议。
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Clinical data quality: a data life cycle perspective.临床数据质量：从数据生命周期角度看
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本文引用的文献
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2
A Comparison of Data Quality Assessment Checks in Six Data Sharing Networks.六个数据共享网络中数据质量评估检查的比较
EGEMS (Wash DC). 2017 Jun 12;5(1):8. doi: 10.5334/egems.223.
3
A conceptual framework for evaluating data suitability for observational studies.用于评估观察性研究数据适用性的概念框架。
J Am Med Inform Assoc. 2018 Mar 1;25(3):248-258. doi: 10.1093/jamia/ocx095.
4
Characterizing the Source of Text in Electronic Health Record Progress Notes.电子健康记录进展记录中文本来源的特征描述。
JAMA Intern Med. 2017 Aug 1;177(8):1212-1213. doi: 10.1001/jamainternmed.2017.1548.
5
A Harmonized Data Quality Assessment Terminology and Framework for the Secondary Use of Electronic Health Record Data.电子健康记录数据二次使用的统一数据质量评估术语和框架。
EGEMS (Wash DC). 2016 Sep 11;4(1):1244. doi: 10.13063/2327-9214.1244. eCollection 2016.
6
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J Biomed Semantics. 2016 Feb 9;7:3. doi: 10.1186/s13326-016-0047-3. eCollection 2016.
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Hidden in plain sight: bias towards sick patients when sampling patients with sufficient electronic health record data for research.隐藏在明显之处：在为研究从电子健康记录数据充足的患者中抽样时，对患病患者的偏好。
BMC Med Inform Decis Mak. 2014 Jun 11;14:51. doi: 10.1186/1472-6947-14-51.
8
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J Biomed Inform. 2014 Oct;51:24-34. doi: 10.1016/j.jbi.2014.03.016. Epub 2014 Apr 13.
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Perspect Health Inf Manag. 2013 Oct 1;10(Fall):1c. eCollection 2013.
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