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

The European Health Data Space focuses on the rights of natural persons in relation to the primary use of personal electronic health data (Article 3 of the proposed Recommendation concentrates on these rights). This session presented and discussed two different national and regional states of play and approaches to implementing Article 3 of the data space. Implementation by national or regional health systems can involve the deployment of data solutions that can be accessed through mHealth apps.

The first speaker was Claus Duedal Pedersen, Sundhed.dk, Denmark who spoke about one national access point for health care data – his example was, of course, that of 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 into the Danish health care environment. Danish people can obtain their data e.g., in .pdf format. This unique set-up creates a starting point for the process of implementing a health data space. 

The second speaker was Juan Guanyabens, Department of Health, Catalunya, Spain who talked about expanding citizens’ access to personal health data in Catalunya. All citizens in Catalunya have access to their personal health record (La Meva Salut) where they can access personal health data and interact with healthcare providers (e.g., through e-booking or e-consultation). At present, however, people do not have control over their own health data. To address this legitimate right, the Catalonian 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 data format and potentially exchange this information with other health providers, thereby creating a bridge between the public and private sectors. Through this system, they will be equipped to share their own data for purposes of both research and improvement of the common good.

This session took place with the support of Engineering Ingegneria Informatica SpA, Italy, and the “Next Generation” of the mHealth Hub.

🗣️ Discussion: First, attendees were interested to discuss meta-data overall, alongside various aspects of data quality, quality assurance, and data transparency. Second, they raised the differences that might occur between public sector and private sector provision of health services and health data. Third, they showed interest in, and concern about, the processing/treatment of the health data of children/minors.

✅ ePoll:The ePoll in this session queried people’s opportunities in their own country to access and control their own personal health data. 

slido session 2



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