Klementi Toomas, Piho Gunnar, Ross Peeter
Department of Software Science, Tallinn University of Technology (TalTech), Tallinn, Estonia.
Department of Health Technologies, TalTech, Tallinn, Estonia.
Front Med (Lausanne). 2024 Jul 16;11:1411013. doi: 10.3389/fmed.2024.1411013. eCollection 2024.
This paper addresses the dilemmas of accessibility, comprehensiveness, and ownership related to health data. To resolve these dilemmas, we propose and justify a novel, globally scalable reference architecture for a Personal Health Data Space (PHDS). This architecture leverages decentralized content-addressable storage (DCAS) networks, ensuring that the data subject retains complete control and ownership of their personal health data. In today's globalized world, where people are increasingly mobile for work and leisure, healthcare is transitioning from episodic symptom-based treatment toward continuity of care. The main aims of this are patient engagement, illness prevention, and active and healthy longevity. This shift, along with the secondary use of health data for societal benefit, has intensified the challenges associated with health data accessibility, comprehensiveness, and ownership.
The study is structured around four health data use case scenarios from the Estonian National Health Information System (EHIS): primary medical use, medical emergency use, secondary use, and personal use. We analyze these use cases from the perspectives of accessibility, comprehensiveness, and ownership. Additionally, we examine the security, privacy, and interoperability aspects of health data.
The proposed architectural solution allows individuals to consolidate all their health data into a unified Personal Health Record (PHR). This data can come from various healthcare institutions, mobile applications, medical devices for home use, and personal health notes.
The comprehensive PHR can then be shared with healthcare providers in a semantically interoperable manner, regardless of their location or the information systems they use. Furthermore, individuals maintain the autonomy to share, sell, or donate their anonymous or pseudonymous health data for secondary use with different systems worldwide. The proposed reference architecture aligns with the principles of the European Health Data Space (EHDS) initiative, enhancing health data management by providing a secure, cost-effective, and sustainable solution.
本文探讨了与健康数据相关的可访问性、全面性和所有权方面的困境。为解决这些困境，我们提出并论证了一种新颖的、全球可扩展的个人健康数据空间（PHDS）参考架构。该架构利用去中心化内容可寻址存储（DCAS）网络，确保数据主体对其个人健康数据保留完全控制权和所有权。在当今全球化的世界中，人们因工作和休闲而日益流动，医疗保健正从基于症状的 episodic 治疗向持续护理转变。这样做的主要目的是患者参与、疾病预防以及积极健康的长寿。这种转变，以及为社会利益对健康数据的二次利用，加剧了与健康数据可访问性、全面性和所有权相关的挑战。
该研究围绕爱沙尼亚国家健康信息系统（EHIS）的四个健康数据用例场景展开：初级医疗用途、医疗紧急用途、二次用途和个人用途。我们从可访问性、全面性和所有权的角度分析这些用例。此外，我们还研究了健康数据的安全性、隐私性和互操作性方面。
所提出的架构解决方案允许个人将其所有健康数据整合到一个统一的个人健康记录（PHR）中。这些数据可以来自各种医疗机构、移动应用程序、家用医疗设备和个人健康笔记。
然后，这个全面的 PHR 可以以语义可互操作的方式与医疗保健提供者共享，无论他们的位置或所使用的信息系统如何。此外，个人有权自主决定将其匿名或假名的健康数据共享、出售或捐赠给全球不同系统用于二次使用。所提出的参考架构符合欧洲健康数据空间（EHDS）倡议的原则，通过提供一个安全、经济高效且可持续的解决方案来加强健康数据管理。
