EU action required to enable efficient sharing of health data across

New research commissioned by the European Commission, DG Sante, from the institute for health services research, NIVEL in collaboration with RCSI University of Medicine and Health Sciences, has identified potential future EU-level actions to enable the more efficient sharing of healthcare data across the EU.

The actions, which include the development of a code of conduct for data collection and sharing along with other non-legislative and legislative actions, would support the establishment of a European Health Data Space to regulate and ensure a consistent approach to healthcare data exchange and improve healthcare provision, research and policy-making across Europe. 

The research revealed that there is too much variation between member states in implementing GDPR in the area of health, in order to create an efficient and effective joint infrastructure.

“Efficient collection and a rights based approach to the sharing of data is critical to the future of healthcare worldwide,” said Ms Mary Kirwan, co-author of the study and member  of the Department of General Practice, RCSI.

“The Covid-19 pandemic has highlighted how important it is that we have access to research and data on a large scale that can enable healthcare policy makers to make informed evidence-based decisions that impact directly on healthcare provision and outcomes for patients.

“The pandemic has done much already to increase willingness for such co-operation and provides us with many new models for rapid, responsive and impactful action. This is essential to the provision of efficient health care across the EU into the future.”

The study, entitled ‘Assessment of the EU Member States’ Rules on Health Data in Light of GDPR’, was conducted over the first months of the Covid-19 pandemic in 2020, as part of preparatory work to provide a framework for the use of health data for healthcare delivery, research and policy making in the EU Member States.