This letter on the European Health Data Space and the ELGA opt-out (Elektronische Gesundheitsakte – electronic health record) was sent to: Austrian Chancellor Nehammer, Vice-Chancellor Kogler, Minister of health Rauch, State Secretary for Digitization Tursky, the Austrian parliamentary party whip, MEPs and network/health policy spokespersons.

Update: Within 24 hours, the government agreed with us and emphasized that digital solutions must be voluntary and that the ELGA opt-out remains. This was also adopted as a position in the Council of the EU.

Update 2: In the plenary session of the European Parliament on 13.12.2023, freedom of choice was saved with an amendment! The motion was adopted in a 373 vs 254 battle vote. The only dissenting vote from Austria was Claudia Gamon from the NEOS.

Health data are among the most sensitive personal data of every human being. It is therefore essential that it receives a particularly high level of protection and that people can decide for themselves whether, how and by whom their own data are processed. The opt-out option in ELGA is therefore a viable solution, but is now at risk of being abolished due to an EU law.

We are alarmed by the current decisions of the European Parliament’s LIBE and ENVI committees on the European Health Data Space (EHDS). Austria has had a major achievement with the opt-out option from ELGA since 2013. It gives people the opportunity to decide for themselves what happens to their most sensitive personal data. With the introduction of the European Health Data Space, this well-established solution would be lost. This could be seen as a forced expropriation of the health data of all 279,337 affected Austrians!

We therefore call on political leaders to preserve this right to self-determination. If the EHDS takes this right away from citizens, we must issue an urgent warning and call for a clear rejection of the EHDS regulation. In specific terms, this means

  • The opt-out for primary use of electronic health data must be retained in the EHDS, which is the only way to preserve the opt-out from the ELGA. According to the EHDS, primary use, i.e. where the treatment and care of patients is concerned, should become mandatory. An opt-out, and thus the free choice, would be taken away from citizens.
  • Secondary use of electronic health data only with opt-in. The use of sensitive health data in an unlimited user group, e.g. for research, regulation or “innovation”, must not become the standard, as envisaged by the EHDS. Such far-reaching use of sensitive health data may only take place with the conscious, active decision of each individual, i.e. by means of opt-in.
  • If these changes are not implemented in the EHDS, we must call on those politically responsible to clearly reject the law in the interests of freedom of choice and security when handling sensitive health data.

The plenary of the EU Parliament will voteon the EHDS at first reading next week on December 13, 2023 and the Council of the EU will continue negotiations on December 19. Dear responsible people, if you care about preserving the voluntary nature of ELGA, please campaign for it quickly and loudly!

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