对患者生成的健康数据的同意管理系统
Pietro Randine1,2, Eliot Salant3, Miroslav Muzny1,2
1Department of Computer Science, University of Tromsø - The Arctic University of Norway, Tromsø, Norway.
Studies in health technology and informatics
|January 25, 2024
概括
本研究引入了使用HL7 FHIR.患者生成的健康数据的同意管理系统. 该系统使患者能够控制他们的敏感健康信息,促进知情同意和数据共享.
科学领域:
- 医疗信息学 医疗信息学
- 数据 隐私 数据 隐私 数据
- 数字健康数字健康
背景情况:
- 根据GDPR等法规保护敏感健康数据,知情同意至关重要.
- 患者往往缺乏足够的信息来做出有关其数据的明智决定.
- 患者生成的健康数据需要强大的同意机制.
研究的目的:
- 为患者生成的健康数据提供一种新的同意管理系统.
- 通过提前提供必要的信息来确保知情同意.
- 为了促进跨境安全的数据交换和重复使用.
主要方法:
- 开发了一个同意管理系统架构.
- 使用HL7 FHIR (快速医疗互操作资源) 作为数据交换格式.
- 使用合成数据对1型糖尿病进行了系统测试.
主要成果:
- 该系统使患者能够有效地管理他们健康数据的同意.
- HL7 FHIR被证明是一个有效的格式,用于明确的数据交换.
- 证明了跨境健康数据共享的潜力.
结论:
- 拟议的系统增强了患者对其健康数据的控制.
- 它支持知情同意,并促进了欧洲卫生数据空间倡议.
- 这种方法促进安全和道德的健康数据重复使用.
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