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Collaboration platform on citizens’ secure access to and sharing of health data across borders

What it is

The objective of this collaboration platform is to understand which good practices are used in each country that are related with citizens’ secure access to and sharing of health data, and thus facilitate the adoption of a European electronic health record exchange format.

More specifically, the activities will involve the need to:

  • Establish a functional collaboration platform on key aspects of the first DTHC priority;
  • Bring together European, national, and regional initiatives and relevant projects, so as to widen citizens’ access to data relevant to their health through health empowerment tools.

Progress so far

On 21st March 2019, a first workshop organized by the “WP4: Collaboration platform on Citizens' secure access to and sharing of health data’ was held in Lisbon, Portugal. Close to 50 participants attended.

The workshop aimed at identifying existing practices, different approaches, key issues and success factors. Activities involved exploring enablers, challenges, incentives, and motivations, and organizational, legal, technical and interoperability issues, for three different subjects:

  • Digital health literacy and empowerment; 
  • Citizen-controlled data governance and data management;
  • Data donation, and the future use and re-use of health data.

What is next

The information collected at the 21st March 2019 workshop is now being processed. As a result, a report will be published that provides a current overview of relevant solutions and systems used in European countries.

Another brief workshop will be held to obtain a better understanding of the good practices used in each country. It will be organized in Lisbon, and is planned for October 2019.