What is data altruism under the EHDS?
The European Health Data Space (EHDS), Regulation (EU) 2025/327, entered into force on 26 March 2025. Among its provisions is a “data altruism” pathway: a legal route for people who want to contribute their health data to research to do so, voluntarily and without payment.
Where it fits in the EHDS
The EHDS creates a common framework across all EU Member States for two uses of health data. Primary use is your own care: patient summaries and e-prescriptions that work across borders. Secondary use is research, policy and regulatory decisions, and it mostly runs through administrative authorisation by national Health Data Access Bodies rather than individual consent.
Data altruism is the consent-shaped exception within that administrative system: instead of your data being made available under an authorisation regime, you actively choose to donate it to research.
The timeline is long
EHDS obligations apply gradually, most of them four years after entry into force. The European Commission is to adopt the detailed implementing acts and Member States to establish Health Data Access Bodies by 2027; the core primary-use exchange and the secondary-use rules for most data categories apply from March 2029. Anyone building on the EHDS is building for the second half of the decade.
What altruism requires in practice
Wanting to donate data is not enough; the donation has to be usable and trustworthy. That requires infrastructure that can:
- record what was consented, for which purpose, and for how long, in plain language;
- keep the consent revocable, because altruism that cannot be withdrawn is not voluntary;
- deliver data that is structured and interoperable, so researchers can actually use it;
- log every access, so the donor can verify their trust was honoured.
Health Data Safe already operates this machinery: granular, revocable, auditable consent on open-source infrastructure, each access mediated by a time-limited, purpose-specific consent record. Patients can donate data to research today, years before the regulation’s deadlines, from inside or outside the EU.
For the legal landscape around it, read GDPR, EHDS, nLPD explained. To contribute or partner, see Join as a partner.