Useful organisations
These organisations shape how health data are handled in Europe: the authorities that write and interpret the rules, the agency that runs Germany’s electronic patient record, the patients’ voice at EU level, and the bodies that work on the technical standards behind it all. We link to them because their own pages are the primary sources for many of the facts on this site.
We are not affiliated with any of these organisations, and they have not reviewed or endorsed this site. Two of them, the European Patients’ Forum and EHTEL, were partners in the former EU project SUSTAINS, according to CORDIS.
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EU authority
European Commission - European Health Data Space
The Commission's official page on Regulation (EU) 2025/327: timeline, patients' rights and what changes for health data in the EU.
health.ec.europa.eu
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EU body
European Data Protection Board (EDPB)
The body of the EU's data protection authorities. It publishes guidelines on how the GDPR is applied, including the right of access.
edpb.europa.eu
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National agency (Germany)
gematik
Germany's national agency for the digital health infrastructure. It is responsible for the telematics infrastructure and publishes usage figures for the electronic patient record (ePA).
gematik.de
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Patient organisation
European Patients' Forum (EPF)
The umbrella organisation of patient organisations at EU level. EPF was a partner in the SUSTAINS project and wrote its patient empowerment questionnaire.
eu-patient.eu
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Professional association
EHTEL - European Health Telematics Association
A European multi-stakeholder forum for people who implement digital health and care. EHTEL was also a partner in the SUSTAINS project.
ehtel.eu
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Standards organisation
HL7 Europe
The European organisation of HL7, which develops standards for exchanging health data, such as HL7 FHIR. These standards decide whether records can move between systems and countries.
hl7europe.org
Screenshots of each website, taken on 18 October 2026. The content belongs to the organisations named.