Joint Statement on the European Health Data Space Draft Proposal: a call for society-centred digitalisation of healthcare

We, the undersigned not-for-profit organisations, representing patients, healthcare professionals, hospital pharmacists, payers, and healthcare institutions call on European policy-makers to ensure a more coherent, fair and society-centred approach to the European Health Data Space (EHDS).

We strongly believe that when it comes to healthcare, research and sensitivities linked with health data, the interest of society must prevail over the market. To ensure that public needs are prioritised over profit, we urge you:


  • Not to support strengthened provisions for IP rights and trade secrets
  • To include provisions on public return on data investment
  • To incorporate a wider range of civil society representatives into EHDS governance
  • To foresee sufficient time to develop and implement the EHDS

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