Petition calls on European Parliament to safeguard patient data privacy

(7 September 2023) Over 100,000 European citizens have called on the European Parliament to protect their privacy in the new European Health Data Space.

EPSU joined WeMove Europe and European Digital Rights (EDRi) on Wednesday, 7 September to present a petition of over 100,000 European citizens urging the Parliament to prioritise patient privacy over corporate interests in the upcoming European Health Data Space.

The European Health Data Space proposal, as it stands, compels healthcare providers to share sensitive medical records with anyone seeking data for research purposes. This includes pharmaceutical companies, tech companies and insurance companies. This data can be requested without asking for patients’ permission to access the data, or to even inform them that they’re using it.

The petition calls on the European Parliament to amend the European Health Data Space proposal to require explicit consent from patients regarding sharing of medical records for purposes not directly related to treatment (aka for secondary use) The position also calls on the Parliament to limit the extensive categories deemed as ‘health data’ and to narrow the scope of how health data can be used and who can access it.

Jan Willem Goudriaan, General Secretary, EPSU said, “The Commission proposal is firmly orientated towards commercial interests. Private health data are the most sensitive information that exists - we cannot allow this information to be exploited for corporate profit through loopholes. The privacy of our health data must come before any commercial interests.”

MEPs Petar Vitanov (S&D, Bulgaria) and Patrick Breyer (Greens, Germany) met with EPSU, EDRi and WeMove Europe to accept the position, emphasising their commitment to ensuring the EHDS respects patient privacy. New statistics from WHO-Europe underline the urgent need to regulate the use of health data by big business, showing that only a third of countries in the region have policies on its use.

Read EPSU’s position on the European Health Data Space here.