DHE Consultation with citizens/patients on the European Health Data Space

This document reports on the European Health Data Space (EHDS) consultation of DHE with citizens, as healthy individuals and as patients, in order to explore their expectations of, and possible interactions with, the EHDS.

This consultation was one of a series of DHE workshops/webinars and surveys that took place during spring, summer and fall 2020, in support of the second priority of the Communication: Better data to advance research, disease prevention and personalised health and care.

As part of this consultation work of DHE, a White Paper on Better Utilisation of Data Infrastructures to Support Secondary Uses of Health Data was published in February 2020. Its aim was to support a dialogue focusing on the needs of the health industry innovation and research sectors that would complement the scope of the EHDS COM(2020)66 “A European strategy for data” presented by the EC in the same month.

The purpose of this focus group report is to present to the EC the identified citizen and patient perspectives on the EHDS. This feedback is intended to be complementary to any direct input that individual citizens/patients or related organisations may have provided to the EC.