Archetypes based Meta-modeling towards Evolutionary, Dependable and Interoperable Healthcare Information Systems

Piho, Gunnar; Tepandi, Jaak; Thompson, Douglas; Tammer, Triinu; Parman, Marko; Puusep, Viljam

doi:10.1016/j.procs.2014.08.069

Cited by 3 publications

(1 citation statement)

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“…Data interoperability —our research group is related to the development of TermX, 1 a platform for developing healthcare terminology and interoperability and other federated semantic interoperability-related development activities ( 66 , 67 , 90 , 91 , 101 ).…”

Section: Analysis and Discussionmentioning

confidence: 99%

A reference architecture for personal health data spaces using decentralized content-addressable storage networks

Klementi,

Piho,

Ross

2024

Front. Med.

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IntroductionThis 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.MethodThe 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.ResultsThe 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.DiscussionsThe 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.

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