Citizens’ secure access to and sharing of health data across borders
What it is
This multi-stakeholder community focuses on understanding 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 performed by the community have involved:
- Establishing a functional collaboration platform on key aspects of the first DTHC priority;
- Bringing together European, national, and regional initiatives, relevant projects and experts to widen citizens’ access to data relevant to their health and increase their awareness about data sharing through empowerment tools and person-centred solutions.
The White Paper includes important conclusions which will help the project to deliver recommendations on how to improve digital health literacy, promote citizens’ access to their health data and enhance citizen and patient commitment towards health data sharing.
The paper collects the findings that the project team have gathered through desk research, expert interviews and wide consultations around existing, novel data sharing governance models, level of trust in and awareness about health data sharing. The paper offers key conclusions for the DHE round tables on person-centred solutions for data sharing mechanisms and data control for citizens.