SIOPE’s input to the consultation highlighted the need to balance data privacy and cross-border data exchange, essential to enable research on childhood cancers
On 25 April 2018, the European Commission released a Communication on enabling the digital transformation of health and care in the Digital Single Market, empowering citizens and building a healthier society.
The Communication outlines the priorities of EU action in the field of eHealth. It follows a public consultation to which SIOPE contributed. SIOPE’s input to the consultation highlighted the need to balance data privacy and cross-border data exchange, essential to enable research on childhood cancers.
It also identified heterogeneity of electronic health records and lack of interoperability as obstacles to data sharing and mentioned the Survivorship Passport model. The European Commission Communication reflects many of the points raised by SIOPE. Thus, it centres on three thematic areas:
- Secure access to and sharing of health data across borders;
- Better data to advance research, disease prevention and personalised health and care;
- Digital tools for citizen empowerment and person-centred care.
Rare diseases are identified as a priority area where the Commission will be looking to “test specific practical applications of cross-border health data exchange for research and health policy to improve treatment, diagnosis and prevention”.
Other important aspects of the Communication include the intention to monitor cross-border interoperability and the development of a European format for electronic health record exchange, as well as the emphasis on innovative digital solutions and new care models.
Relevant actions at the EU level are expected to receive support from the Connecting Europe Facility and Horizon 2020 programmes.
European Commission Communication on enabling the digital transformation of health and care in the Digital Single Market; empowering citizens and building a healthier society: https://ec.europa.eu/digital-single-market/en/news/communication-enabling-digital-transformation-health-and-care-digital-single-market-empowering