来自大型可互操作健康记录的真实世界数据的二次使用的开放架构
Patrick Mangesius1,2, Thomas Schabetsberger1,2, Karl Kreiner3
1Siemens Healthcare Diagnostics GmbH, Austria.
Studies in health technology and informatics
|August 8, 2025
概括
这项研究提出了一个新的架构,用于从电子健康记录 (EHR) 收集现实世界的数据进行研究. 它解决了数据访问和隐私方面的挑战,支持诸如欧洲健康数据空间 (EHDS) 等倡议.
科学领域:
- 医疗信息学 医疗信息学
- 医学研究 医学研究
- 数据科学数据科学数据科学
背景情况:
- 电子健康记录 (EHR) 对医学研究至关重要,但数据收集面临挑战.
- 患者数据捐赠越来越重要,特别是在欧洲健康数据空间 (EHDS) 中.
- 目前的方法在对象招募和二次数据使用的数据质量方面扎.
研究的目的:
- 提出一个可扩展的,开放的架构,用于从EHR收集现实世界的数据,用于二次使用.
- 为了研究目的,促进有效和安全地获得有价值的健康信息.
- 支持欧洲健康数据空间 (EHDS) 框架的目标.
主要方法:
- 评估了欧盟当前的EHR技术,作战准备和互操作性标准.
- 进行了文献搜索,以确定相关工作,并为建筑设计提供信息.
- 开发了一个基于已建立的互操作性标准的开放架构.
主要成果:
- 提出了一个集成IHE和FHIR互操作性标准的开放架构.
- 该架构旨在无集成到现有的基于标准的EHR系统中.
- 它包含了管理患者同意和数据隐私区的机制.
结论:
- 拟议的架构为EHR数据的二次使用提供了一个可扩展的解决方案.
- 它提高了研究数据的可访问性,同时尊重患者的隐私和同意.
- 该框架支持推进个性化医疗和公共卫生倡议.
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