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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 workshop report was the starting point for an analysis of state-of-play initiatives related to the secure access to and sharing of health data in use by citizens across Europe.

Desk research has analysed the state-of-the-art of the most relevant initiatives related with the citizens’ secure access to their health data. It includes an assessment of relevant Horizon 2020 projects.

Important data on projects related to “Citizens’ secure access to their health data and making use of it” has been collected through a survey. eHAction consortium partners, and organisations that represent patients and/or citizens, were asked to complete the questionnaire.


What is next

The survey results will help Europeans formulate a definite point of view on how health data matters. Survey findings will be ready in November 2019. A workshop will be held in the first quarter of 2020.

Desk research of relevant initiatives, fostering citizen-controlled data governance and existing data donation programmes, will help create a catalogue of initiatives, due out in October 2019.

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

All this work will culminate in the multi-stakeholder community developing a series of policy recommendations. The result will be a White Paper on better citizen access and control of data, due out by October 2020.