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

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. A report with the main findings was made on this activity.

Desk research of relevant initiatives, fostering citizen-controlled data sharing governance and existing data sharing programmes was developed in the Spring and Summer of 2019 and brought to light a number of existing initiatives in these areas. These most relevant stakeholders were invited in December 2019 to integrate a Forum on Data Sharing Governance, that was launched during the Digital Health Society Summit, in Helsinki, Finland. The stakeholders of the Forum are currently being interviewed for collection of the most relevant inputs that can be used to draw a report with guidelines and Recommendations in Data Sharing Governance.

What is next 

In order to continue the involvement of several important stakeholders, interviews are being held. These interview work aims to collect important views and expertise on topics such as: Access to and sharing of data relevant to citizens’ health; Data sharing governance models; European electronic health record exchange format; Interoperability. To explore these and expertise further a workshop will be held in March of 2020 in Lisbon.

A large poll on data sharing aiming at collecting the “common citizen” perception is being released in March 2020, and will inform the recommendations related to the needs of awareness, campaigns and literacy.

The team will also 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.

In June 2020 the report with guidelines and Recommendations in Data Sharing Governance will be released, as a first structured output that will be further used for stakeholder engagement and refinements until the end of the project.

The final written result of this WP will be a White Paper on better citizen access and control of data, due out by October 2020.

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.