New CPME Policy on the European Health Data Space – Focus on Health Research and Policy MakingComments Off on New CPME Policy on the European Health Data Space – Focus on Health Research and Policy Making

On 20 March, CPME adopted a policy on the EHDS with a focus on health research and policy making. CPME welcomes the EHDS as it can contribute to improve disease prevention, patient-oriented health care and better treatment options.

CPME stresses that the EHDS should have a clear legal framework, based on the GDPR and transparent policies concerning the processing of patient data available for business and government, in particular on medical confidentiality (Declarations of Helsinki and Taipei apply), data access, secondary use of data, information rights, feedback of findings, transfer to third parties, mixed patient data sets, data altruism, interoperability and data infrastructures. The EHDS should be used for public good (the legitimate purpose) and a common understanding on the latter is required.

CPME advises that the EHDS should start from specific and identified use cases where data sharing is urgently needed, e.g. cancer, COVID-19 and antibiotic treatments. A Code of Conduct should be developed, applied to both public or private entities using or contributing to the Space. Clarification is also needed on who should be the legitimate users and contributors to the Space.

To be able to trust such a Space is key, hence it needs to be governed by an independent authority with overarching control on generated datasets in the Space, where an independent expert from each Member State is represented. Such authority must be subjected to the supervision of the European Data Protection Supervisor, ensuring consistent coordination with the European Data Protection Board.