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Preparing the EU for Digital Health

May 2020

Health is an area which Europe can undoubtedly benefit from, during the data and Artificial Intelligence revolution. The COVID-19 pandemic has demonstrated how accurate and quickly accessible data is fundamental in the management of cross-border public health emergencies. Nevertheless, the road to fully exploit the potential benefits of data and AI in health is only partially built, still extremely fragmented and not yet developed with patients’ views at the centre.

To strengthen the patient community voice on digital health, over the past few months EPF has been working on several initiatives and publications addressing some of the most important updates in this field.

In response to the publication of the European Commission’s new plans on digitalisation in February, which included a novel Data Strategy and a White Paper on AI, EPF launched a broad consultation initiative involving its 75 national and European members. The process included two webinars to collect patient groups’ views and a dedicated exchange with the EPF Digital Health Working group. To support this initiative, EPF has also published an EU Policy Briefing on Big Data and Artificial Intelligence plus a summary report from our recent survey on Electronic Health Records.

The consultation and the supporting documents highlighted several concerns and calls from the patient community. Focusing on the future of health data in the EU, patients need to be in better control of their data, consent mechanisms and data protection rights must be clearer and fit-for-purpose, and health literacy and patients’ empowerment are crucial elements to realise data-driven innovation in healthcare. The discussion on the Data Strategy also highlighted the need for more inclusive and user-friendly data-based applications and products, and further clarity on the definition of key concepts such as data use for public interest or data ownership. EPF also welcomes the European Commission’s intention to develop a sector-specific European Health Data Space (EHDS), provided that, among other things, it will be based on an appropriate framework addressing the key concerns shared above and on strengthened and harmonised infrastructures and interoperability, to allow secure health data flow across the EU (find out more about our work on digital health here). 

Building on the responses to the European Commission’s Data Strategy (here) and White Paper on Artificial Intelligence (here), EPF, in consultation with its members, will further deepen its work in the field of Digital Health during the second half of the year. We will discuss new initiatives and a work plan with the EPF Digital Health Working group, follow and react to the European Commission and European Parliament initiatives and explore the potential for new publications on data and AI.

For more information please contact Policy Adviser Michele Calabro' at michele.calabro@eu-patient.eu

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Related documents

AI White Paper_Consultation Response_EPF_Statement_FinalVersion.pdf

Data Strategy Consultation Response - EPF Statement_FinalVersion.pdf