24 March 2023
ERS has called on European co-legislators to ensure that the European Health Data Space (EHDS) framework will allow Europe to remain at the forefront of medical research and enable the free flow of scientific data where medical researchers are central to Europe’s health and competitiveness.
ERS supports the initial proposal of the European Commission and believes that it already provides the necessary safeguards to ensure the privacy of citizens by facilitating data sharing either in anonymised or, when necessary, in pseudonymised format.
The opt-out mechanism, defined by article 33, paragraph five in the draft report, could be the way forward only if supported by detailed governance compliance rules and uniform implementation across Europe. Conversely, an opt-in mechanism would not allow the EHDS to develop and would actively prohibit progress on a truly borderless health data exchange.