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Session 2 | Citizens’ rights of access and transmission of personal health data: Implementation models and approaches

DAY 1 | 28 November 2022 | 14:30 CET (GMT +01:00)

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With the support of Engineering Ingegneria Informatica SpA, Italy, and Next Generation of mHealth Hub

📝 Session abstract


The European Health Data Space focuses on the rights of natural persons in relation to the primary use of their personal electronic health data: Article 3 of the proposed Recommendation focuses on these rights. 

This session will present and discuss different national and regional states-of-play and approaches to implementing Article 3 of the data space. Implementation by national or regional health systems entails the deployment of solutions – like those of the USA’s Blue Button – that can be accessed through mHealth apps. Once data is in people’s own hands, more options emerge that can support self-care and health research. Is a European version of the Blue Button the way forward?

Moderated by Matteo Melideo, Engineering Ingegneria Informatica SpA, Italy.


🗣️ Speakers


One national access point for health care data

Claus Duedal Pedersen, Sundhed.dk, Denmark

In Denmark, patients access to health care data takes place though the national portal, Sundhed.dk. The portal is integrated with more than 170 different systems in the Danish health care environment. This unique set-up creates a very good starting point for the process of implementating an EHDS. 

Expanding citizens’ access to personal health data: the Catalan approach

Joan Guanyabens, Department of Health, Catalonia, Spain

All citizens in Catalonia have access to their personal health record (La Meva Salut) where they can access personal health data and interact with healthcare providers (e-booking, e-consultation). However, at present, they do not have control over their own data. To address this legitimate right, the Department of Health has developed an access system inspired by the USA’s Blue button: in it, citizens can download their patient summary in C-CDA format and potentially exchange this information with other health providers, therefore bridging the public and private sectors. Through this system, they will also be equipped to share their data both for research and to improve the common good.

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