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

Toomas Klementi1, Gunnar Piho1, Peeter Ross2,3

  • 1Department of Software Science, Tallinn University of Technology (TalTech), Tallinn, Estonia.

Frontiers in Medicine
|July 31, 2024
PubMed
Summary

A novel Personal Health Data Space (PHDS) architecture using decentralized storage ensures data ownership and control. This solution enhances health data accessibility, comprehensiveness, and interoperability for individuals and secondary uses.

Keywords:
European Health Data Space (EHDS)a reference architecture for global health data spaceand ownership dilemmascomprehensivenessdecentralized content-addressable storage (DCAS) networkshealth data accessibilityprimary and secondary usesemantic interoperability

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Area of Science:

  • Health Informatics
  • Data Science
  • Digital Health

Background:

  • Growing mobility and the shift towards continuous care necessitate better health data management.
  • Challenges in health data accessibility, comprehensiveness, and ownership are amplified by secondary data use.
  • Existing systems struggle to provide individuals with complete control over their health information.

Purpose of the Study:

  • To propose a novel, globally scalable reference architecture for a Personal Health Data Space (PHDS).
  • To address the dilemmas of health data accessibility, comprehensiveness, and ownership.
  • To ensure data subjects retain complete control and ownership of their personal health data.

Main Methods:

  • Developed a reference architecture for a Personal Health Data Space (PHDS).
  • Leveraged decentralized content-addressable storage (DCAS) networks.
  • Analyzed four Estonian National Health Information System (EHIS) use cases (primary medical, emergency, secondary, personal) focusing on data aspects and security, privacy, and interoperability.

Main Results:

  • Individuals can consolidate diverse health data into a unified Personal Health Record (PHR).
  • The PHR enables semantically interoperable sharing with healthcare providers globally.
  • Individuals can autonomously share, sell, or donate anonymized/pseudonymized data for secondary uses worldwide.

Conclusions:

  • The proposed PHDS architecture provides individuals with complete control and ownership of their health data.
  • The solution enhances health data accessibility, comprehensiveness, and interoperability.
  • The architecture aligns with European Health Data Space (EHDS) principles, offering a secure, sustainable, and cost-effective approach to health data management.