One of the current European Commission priorities is the digital transition, officially called “A Europe fit for the digital age: Empowering people with a new generation of technologies”. As patients’ representatives advocating change for all people with allergy and airways diseases, we are contributing with our voice to the many proposals upcoming for digital health.
The most important workstream for patients is the development of the European Health Data Space (EHDS), a regulation to promote better exchange and access to different types of health data (electronic health records, genomics data, data from patient registries etc.). This is not only to support healthcare delivery (so-called primary use of data) but also for health research and health policy making purposes (so-called secondary use of data).
The EHDS will be built on three main pillars:
- a strong system of data governance and rules for data exchange
- data quality
- strong infrastructure and interoperability
EFA participated together with the European Academy of Allergy and Clinical Immunology (EAACI) in the first stage of the consultation on the EHDS encouraging the European Commission to:
- Develop an EU framework of trust and ethical standards around how data is being collected, shared, used, and processed, with patients as central actors. Health data contains the most sensitive facts of an individual and require extreme caution in their handling.
- Lowering technical barriers to data filling persisting gaps in the individual exercise of health data rights, largely due to a fragmented policy landscape across the EU.
- Improve patients and citizens access to data and enabling citizen science: the development and integration of patient-driven, Real-World Evidence (RWE) data to improve self-management and meaningful patient-reported outcomes.
- Boosting digital health in Europe: for diagnosis, optimal care decisions, and improving treatment adherence, conceived as a part of the healthcare system with digital health equity, removing barriers to access digital services.
- Ensuring informed, involved and empowered patients based on the principle of inclusiveness, and design and implement the space fully taking patients’ considerations into account.
The European EU digital age priority foresees to integrate digital legislative and non-legislative proposals in the following areas: artificial intelligence, European data strategy (see our contribution), European industrial strategy, High Performing Computing (HPC), Digital Markets Act, Digital Services Act, cybersecurity, Digital skills and Connectivity.
You can read EFA full response to the EHDS consultation in the Have your Say portal.
More information about the EHDS consultation, legislative process.