European Health Data Space Regulation
After the publication of the European Strategy for Data early 2020, the European Commission has been working on a future European Health Data Space (EHDS) to promote better exchange and access to different types of health, to support healthcare delivery as well as health research and health policy making.
EFA, in close coordination with the organisations in the European Lung Health Group, participated in two official consultations from the European Commission on the EHDS. EFA’s position welcomes the great potential of digitalisation in healthcare but asserts that digital health should in no way replace in-person healthcare. EFA’s evidence shows that asthma and COPD patients trust their healthcare professionals and consider them as the most reliable source of information. That relationship remains at the core of chronic disease care. EFA also stressed the great opportunity to address every aspect of health and social inequalities by fostering digital literacy and reducing technical administrative burdens for patients to access the future tools and platforms.
EFA published a joint submission with the BBMRI-ERIC (a research infrastructure for biobanks and biomolecular resources) to the consultation on the legislative framework for the governance of common European data spaces in July. Together we argued that a health data space ambition should connect researchers with existing data infrastructures, research networks and patient groups in order to advance healthcare.
THANK YOU!
Sincere thanks to the members participating in the Patient Education, Prevention, Allergy & Asthma, Food Allergy, Atopic Eczema and COPD Working Groups for their valuable contribution to the EFA responses in official public consultations.
EFA would like to thank Erna Botjes from the Dutch Stichting Voedselallergie who represented EFA at the EMA PCWP.