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März 2023

Joint statement on the European Health Data Space Draft Proposal

A call for society-centred digitalisation of healthcare

EURORDIS-Rare Diseases Europe – alongside a number of other major, non-profit European health alliances representing patients, healthcare professionals, hospital pharmacists, payers, and healthcare institutions – has issued a joint statement calling on EU policymakers to ensure a more coherent, fair and society-centred approach to the European Health Data Space (EHDS).

Our organisations jointly believe that plans for the EHDS must include:

  • Not supporting strengthened provisions for intellectual property (IP) rights and trade secrets.
  • Including provisions on public return on data investment.
  • Incorporating a wider range of civil society representatives into EHDS governance.
  • Foreseeing sufficient time to develop and implement the EHDS.