Everywhere in Europe, nationwide eHealth infrastructures have grown out of their infancy. Electronic Health Records (EHRs) connect health professionals and citizens/patients, leading the way towards mature digital health services.
The speed of digital care transformation had increased significantly in European member states, even before the impact of the COVID-19 digitisation “booster”:
Sharing digital health data between patients, healthcare institutions and research is a fast-growing reality for national and regional platforms. Many use cases support patient empowerment, and provide patients with access to, and control of, their personal health data.
Sharing digital data across borders has been a little delayed. The available use cases are more limited, and often exclude citizens/patients from having direct access to their data.
Linking clinical routine care and data insights is an urgent challenge today. The flexible flow of digital health data from clinical practice (i.e., real-world data) to research (governed by GDPR-compliant policies) is a crucial need for up-to-date healthcare.
Figure 1: Boosting data availability: Health data from routine clinical practice (real-world data)
The European Health Data Space(s), outlined in “A European strategy for data", offering promising and forward-looking perspectives. This EU strategy aims at creating a single market for data that will ensure Europe’s global competitiveness and data sovereignty. Rules for access to and use of data that are fair, practical, and clear are key to creating common European data spaces.
The European data strategy relies on health as one key use case and provides a domain-specific action plan towards a European Health Data Space.
A crucial topic throughout 2020 is the shift from infrastructures to meaningful digital health services, and the way in which this involves EHTEL-like organisations (ELOs). The ELO Network has been a long-standing voice, present throughout the existence of the EHTEL multistakeholder platform.
ELO Network members are eHealth-related competence centres. Most of them are government-driven organisations involved in eHealth infrastructure planning and implementation. Operational activities focus on standardisation, interoperability and certification.
The lessons learned by the ELO Network competence centres will also be essential for working towards European Health Data Space(s), as envisaged by the EC Communication. The competence centres have always worked together, sharing expertise and knowledge.
To prepare this shared contribution, the ELO Network is organising a series of webinars. The webinars will act as a platform to jointly understand and debate the EU data strategy. There will be an emphasis on the European Health Data Space (EHDS) concept and its potential impact on activities in the scope of ELOs’ responsibilities.
The relevance of this process is further endorsed by the fact that Germany sees the EHDS as one of its focal themes for the EU Presidency in the second half 2020.
While usually not involved in operations of health data processing or research, ELO Network organisations can act as enablers of real-world health data-sharing for the purposes targeted by the strategy in the health domain as follows:
Citizens have the right to access and control their personal health data and to request data portability within and across borders.
Regulatory and research models rely on access to health data, including individual level data from patients.
Strengthening and extending the use and re-use of health data could help healthcare authorities to improve the functioning of healthcare systems. Much of the data needed will come directly from European patients willing to share their data. The new digital products that emerge will boost European businesses and industry, in many fields in healthcare
Innovations include Artificial Intelligence (AI), which is covered in a separate 2020 White Paper accompanying the 2020 Communication.
Figure 2: Managing all healthcare data in a joint health data space
Four outcomes are expected from this work programme:
1. Networking of eHealth competence centres, other EHTEL members and partners: Debating lessons learned and insights around the European data strategy and its implementation in the healthcare sector.
3. Fact sheets: a summary of key messages, discussion and conclusions for each webinar, also published on EHTEL’s website.
4. Final report: Webinars’ presentations and input, and summaries of discussions will be compiled for a final report.
European Strategy for Data: Pathways for moving towards (Health) Data Space
📅 Thursday, 20 May 2020 🕙 11am - 12:15pm
Making real-world data fit for EHDS: Enablers for meaningful data re-use
Investments and regulations for better data sharing and data re-use: What is needed?