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Citizens’ secure access to and sharing of health data across borders

What it is

The objective of this multi-stakeholder community 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.

A report was written on the March 2019 workshop. As a result, DigitalHealthEurope has an overview of relevant digital solutions and systems used in European countries. This information is the starting point for an analysis of state-of-play initiatives related to secure access to and sharing of health data currently in use by citizens across Europe.

Another workshop will be held to gain a better understanding of the good practices used in each European member state. It will be organized in Lisbon, Portugal and is being planned for November 2019.

What is next

A survey will be used to collect important data for projects related to “Citizens’ secure access to their health data and making use of it”. eHAction  consortium partners, and organisations that represent patients and/or citizens, are being asked to complete the survey. The results will help Europeans formulate a definite point of view on where such data matters. Findings will be ready after September 2019.

Important work, moving forward, includes taking a closer look at projects in which DigitalHealthEurope partners are involved. Examples are projects related with the secure access to and sharing of health data (Examples include Horizon 2020 projects). A report will present the most relevant projects and initiatives in this field.

Desk research of relevant initiatives fostering citizen-controlled data governance and existing data donation programmes will help create a catalogue of initiatives.

A portfolio of data flows between devices will be put together. It will help to sketch out interoperability requirements, by highlighting where these data flows align with electronic health record interoperability requirements, and where they differ.

All this work will culminate in the multi-stakeholder community developing a series of policy recommendations and elaborating a White Paper on better citizen access and control of data.