Large amounts of valuable health data are generated and collected during and between citizens' medical examinations across Europe. However, opportunities to reuse these data for research and better healthcare are often missed because health data continue to be confined in data silos, often not matching semantic standards, quality needs and safe data exchange techniques. With 24 official languages spoken across EU Member States, the EU eHealth interoperability task is even more daunting. In order to fully unlock these sources of value, effort must be invested in standardisation and harmonisation (including common clinical models, tools and agreed approaches), privacy and security (including data access and data integrity) and communication (towards citizens, patients and healthcare providers) to allow citizen/patient empowerment, advance medical science and improve health for everyone. Infrastructures are nowadays mature enough to host extensible and secure EHR services that can extend the healthcare continuum across borders and possibly embrace social care as well as healthcare-related data storage services such as fitness/wellbeing.Scope:
The focus is on developing and testing an extensible, secure and interoperable platform in compliance with the General Data Protection Regulation and the Network and Information Systems directive. The work should include the development of a European prototype implementation with embedded security and large scale testing and validation in a set of use cases with demonstrated relevance for citizens' health and with involvement of citizens, hospitals, medical doctors, pharmacies and health professionals across Europe. Health authorities should be involved in the relevant parts of the proposed work.
This action is expected to prototype a (i) citizen-centered implementation of a platform that can be integrated in a federated platform structure, easy-to-use and secure, constantly accessible and portable within any other Member States of the EU and (ii) a data-driven platform to help the scientific community to benefit from user generated data (health, care, and health-related) going beyond the currently established level of implementation. Social Sciences and Humanities should thereby be considered appropriately.
The proposal should demonstrate its ability to providing a harmonised/standardised and interoperable platform with demonstrated relevant functionalities at the different user levels including, but not limited to:
This prototype should be primarily focused on citizens' health data generated by the citizens themselves, healthcare professionals or sourced from relevant healthcare organisations. It should include relevant components to enable further medical purposes and health research. This prototype should also be extensible so as to be able to integrate subsequent types of data such as quantified-self data or Omics data.
The consortium should cover a wide range of relevant stakeholders with multi-disciplinary expertise in technology, health and care, legal aspects, interoperability and user engagement. Involvement of Industry and health organisations is encouraged in the most appropriate phases of the project. as well as a balanced European collaboration.
The design of the prototype should be user driven as to ensure the early buy-in of final users (from citizens to healthcare professionals and scientists). It should demonstrate tested and validated functionality in exchange of realistic and fit for the purpose EHR datasets exchange bi-directionally between: 1. hospitals, 2. medical doctor practitioners and hospitals, 3. hospitals and citizen, 4. medical doctor practitioner and citizen 5. Cross-border hospitals and 6. Citizen and research database.
Additionally, a targeted communication and education campaign with key information and tools should be produced to explain the functioning and purpose of the infrastructure (from empowerment of the citizen and promotion of health to the contribution to research) and incentives should be provided to users to accelerate the take-up and sustainability of the platform. The Connecting Europe facilities and the activities of the eHealth network should be taken into account to avoid duplication.
The Commission considers that proposals requesting a contribution from the EU of between EUR 6 and 10 million would allow this specific challenge to be addressed appropriately. Nonetheless, this does not preclude submission and selection of proposals requesting other amounts.Expected Impact:
The proposal should provide appropriate indicators to measure its progress and specific impact in the following areas:
Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation): http://eur-lex.europa.eu/eli/reg/2016/679/oj
Directive (EU) 2016/1148 of the European Parliament and of the Council of 6 July 2016 concerning measures for a high common level of security of network and information systems across the Union: http://eur-lex.europa.eu/eli/dir/2016/1148/oj
The CEF eHealth initiative: https://ec.europa.eu/cefdigital/wiki/display/CEFDIGITAL/CEF+Digital+Home
The eHealth Network activities: https://ec.europa.eu/health/ehealth/policy/network_en