在法国一所地区性大学医院实施 "从蓝图到床边 "的生物医学数据仓库:揭示流程、克服挑战并提取临床洞察力。

IF 3.1 3区 医学 Q2 MEDICAL INFORMATICS JMIR Medical Informatics Pub Date : 2024-06-24 DOI:10.2196/50194
Matilde Karakachoff, Thomas Goronflot, Sandrine Coudol, Delphine Toublant, Adrien Bazoge, Pacôme Constant Dit Beaufils, Emilie Varey, Christophe Leux, Nicolas Mauduit, Matthieu Wargny, Pierre-Antoine Gourraud
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引用次数: 0

摘要

背景:生物医学数据仓库(BDW)已成为促进研究和决策应用中健康数据再利用的重要工具。除技术问题外,生物医学数据仓库的实施还需要强有力的机构数据管理以及对欧洲和国家研究数据访问和使用管理法律框架的业务知识:在本文中,我们将介绍一家地区性大学医院 BDW 的复合实施过程和内容:我们介绍了为开发南特 BDW 而在组织变革、技术架构和共享管理方面采取的行动和面临的挑战。我们描述了访问临床内容的过程,介绍了患者数据保护的细节,并用实例说明了合并临床见解的过程:超过6800万份文本文档和5.43亿条编码信息涉及2002年至2022年间CHUN收治的约150万名患者,可通过查询和转换提供给研究人员。自2018年创建以来,已有269个项目受益于南特BDW。数据访问根据数据使用和监管要求进行组织:数据使用完全由提出的科学问题决定。它是二次使用数据访问合法性的载体。对研究和所有需要数据的业务情况来说,启用访问边界数据集的功能将改变游戏规则。最后,在医疗专业人员和患者面前,机构数据战略中的数据管理必须优先于技术问题。
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Implementing a Biomedical Data Warehouse From Blueprint to Bedside in a Regional French University Hospital Setting: Unveiling Processes, Overcoming Challenges, and Extracting Clinical Insight.

Background: Biomedical data warehouses (BDWs) have become an essential tool to facilitate the reuse of health data for both research and decisional applications. Beyond technical issues, the implementation of BDWs requires strong institutional data governance and operational knowledge of the European and national legal framework for the management of research data access and use.

Objective: In this paper, we describe the compound process of implementation and the contents of a regional university hospital BDW.

Methods: We present the actions and challenges regarding organizational changes, technical architecture, and shared governance that took place to develop the Nantes BDW. We describe the process to access clinical contents, give details about patient data protection, and use examples to illustrate merging clinical insights.

Unlabelled: More than 68 million textual documents and 543 million pieces of coded information concerning approximately 1.5 million patients admitted to CHUN between 2002 and 2022 can be queried and transformed to be made available to investigators. Since its creation in 2018, 269 projects have benefited from the Nantes BDW. Access to data is organized according to data use and regulatory requirements.

Conclusions: Data use is entirely determined by the scientific question posed. It is the vector of legitimacy of data access for secondary use. Enabling access to a BDW is a game changer for research and all operational situations in need of data. Finally, data governance must prevail over technical issues in institution data strategy vis-à-vis care professionals and patients alike.

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来源期刊
JMIR Medical Informatics
JMIR Medical Informatics Medicine-Health Informatics
CiteScore
7.90
自引率
3.10%
发文量
173
审稿时长
12 weeks
期刊介绍: JMIR Medical Informatics (JMI, ISSN 2291-9694) is a top-rated, tier A journal which focuses on clinical informatics, big data in health and health care, decision support for health professionals, electronic health records, ehealth infrastructures and implementation. It has a focus on applied, translational research, with a broad readership including clinicians, CIOs, engineers, industry and health informatics professionals. Published by JMIR Publications, publisher of the Journal of Medical Internet Research (JMIR), the leading eHealth/mHealth journal (Impact Factor 2016: 5.175), JMIR Med Inform has a slightly different scope (emphasizing more on applications for clinicians and health professionals rather than consumers/citizens, which is the focus of JMIR), publishes even faster, and also allows papers which are more technical or more formative than what would be published in the Journal of Medical Internet Research.
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