The European Cancer Organisation congratulates MEP Tomislav Sokol and MEP Annalisa Tardino for bringing forward a balanced and improving draft report of the European Parliament on the proposed Regulation to create a European Health Data Space. Amendments to the proposal, if accepted, would, for example, ensure stronger stakeholder involvement in the governance of the European Health Data Space, support clear targets for implementation, and give attention to the funding support required to help Member States meet the new obligations together. These are all highly welcomed and very much in line with key points of potential improvement expressed by the European Cancer Organisation.
Subsequent to the publication of the draft report, the European Cancer Organisation has become aware of an important debate concerning the right of citizens and patients to be able to exercise an opt-out from the European Health Data Space in respect to the use of their health data for secondary uses, such as research. There is some suggestion presently that this protection of citizen rights should even be further secured via the use of an opt-in mechanism instead.
Understanding the criticality of this matter, and having consulted with its member societies, Patient Advisory Committee and Digital Health Network, the European Cancer Organisation makes the following commentary.
Download the ECO Statement of View here.
Download the ECO EHDS Amendments Proposal to the Draft European Parliament Report here.