Skånberg

Architecture & Engineering

Rethinking Health Data Architecture

Introduction

I am a former medical student. During 1.5 years of medical school on Swedish wards, I saw slow IT systems steal clinical time from workers. Endless log-ins, calls for records, PDFs printed for signatures. After witnessing this dinosaur tech, I started wondering how it could be improved. Sweden today runs 21 half‑independent electronic health‑record (EHR) platforms, many of which are not able talk to each other. Doctors fax, phone or re‑enter information, while cybersecurity incidents rise and patients rarely see a complete record of their own care (1–4). If I were to break a leg on holiday in the North of Sweden, they wouldn’t have access to my basic medical information. Strange. The European Health Data Space (EHDS) will soon demand seamless, cross‑border exchange (9). This paper sketches a permissioned‑blockchain idea that could sit above existing EHRs.

Why Is This Needed?

  • Scattered systems: Today, each region buys or builds its own system (TakeCare, Melior, VAS, Millennium, etc.). Even services like NPÖ expose only summaries and can fail when metadata are missing (2,4). This is slow and unnecessarily expensive.
  • Security gaps: Riksrevisionen and MSB have both flagged uneven information‑security maturity across providers (3,7).
  • Patients are frustrated: Patients log in with BankID to countless different portals, often not finding their full notes. Journals are scattered, incomplete and difficult to find.

Quick Concept

This is not a new medical record system. It would rather be something like a shared logbook which is kept on a secure, permissioned blockchain, that sits above the existing EHRs. Every time someone views or changes a record, the action is written to the log:

  • Who did what, to which record, and when
  • Who has permission to open or share it

The medical data itself stays in the hospital systems. The blockchain only stores digital “fingerprints” and consent events. Because it is distributed, no single region controls the log. Instead, regions and national agencies run the nodes together. The ledger lets hospitals in different regions verify consent and securely fetch records from each other’s systems, without merging them. All accesses are logged so patients and regulators can see who viewed what. The system could speak HL7 FHIR with Swedish Base Profiles (10), so it plugs into existing standards. Patients approve access using BankID today. Or, in the future, EU digital wallets under the revised eIDAS (6).

Open Questions

Below is a list of deliberately unresolved issues that are yet to be figured out.

Who runs it?

  • Who gets to run nodes? Regions or national control? Do private players join?

Who can look?

  • Do doctors need patient OK each time? How are emergency lookups checked? Can long-term teams get standing access?

Identity

  • Is BankID enough? How do kids or those without BankID delegate?

What goes on-chain?

  • Which bits of data are safe under GDPR? How do we handle “right to be forgotten”?

Tech fit

  • How do free-text notes and images map to FHIR/DICOM?

Money

  • Who pays to host and store the chain?

Security

  • How does it meet new EU cyber rules? What if keys are leaked?

Current Swedish Conditions

  • Digital identities: 98 % of adults already use BankID daily (6).
  • Policy momentum: Government inquiry Ökad interoperabilitet i hälso‑ och sjukvården (SOU 2024:33) recommends a national digital health‑data infrastructure (5).
  • Current standard: HL7 Sweden maintains national FHIR profiles adopted by several regions (10).

Globally Scalable?

  • Standards: Leveraging open standards like HL7 FHIR, means a Swedish pilot can interoperate with parallel efforts in the EU and beyond.
  • Global policy: The WHO Global Strategy on Digital Health 2020–2025 and the G7 annex on digital‑health standards both call for consent‑based, cross‑border data exchange (13,14).
  • Governance model: A blockchain can scale horizontally. New nodes can be added instead of rebuilding entire infrastructures over and over again.

Conclusion

Sweden has people already using BankID, the policy climate, and the EU mandate to test something like this. This is a seed for further thought, not a blueprint. Whether blockchain is ultimately chosen or swapped for another stronger technology is irrelevant. The real value lies in agreeing common governance, consensus and audit guarantees. This would lead to a hugely improved experience both for caregivers and patients. The next step is a small, carefully scoped pilot that answers the open questions listed above.

References

  1. E‑hälsomyndigheten. Årsrapport Nationell kontaktpunkt för e‑hälsa 2024. 2024.
  2. E‑hälsomyndigheten. Slutrapport: Hur sammanhållen journalföring kan nyttjas i större utsträckning. 2022.
  3. Riksrevisionen. Informationssäkerhet i vård och omsorg – statens stöd och tillsyn. 2024.
  4. Socialstyrelsen. Teknisk specifikation för NPÖ. 2022.
  5. Sveriges Kommuner och Regioner (SKR). Meddelande 10/2024: Överenskommelse Forum för framtidens hälso‑ och sjukvård. 2024.
  6. Myndigheten för digital förvaltning (DIGG). eIDAS‑förordningen – vägledning. 2024.
  7. Myndigheten för samhällsskydd och beredskap (MSB). EU förändrar cybersäkerhetsområdet – lägesrapport. 2023.
  8. Guardtime. Increasing Healthcare Security with Blockchain Technology. 2024.
  9. European Commission. Regulation (EU) 2025/327 on the European Health Data Space. Official Journal of the EU. 2025.
  10. HL7 Sweden. Swedish Base Profiles Implementation Guide v1.1.0. 2025.
  11. Council of the EU. Press release: Council adopts the EHDS regulation. 2025.
  12. Gordon WJ, et al. Blockchain Personal Health Records: Systematic Review. JMIR 2021;23(4):e25094.
  13. World Health Organization. Global Strategy on Digital Health 2020–2025. Geneva: WHO; 2020.
  14. G7 Health Working Group. Annex on Digital Health Standards. Communiqué of the G7 Health Ministers’ Meeting; 2024.