xShare project for personal health data portability

12 December 2023

The xShare project has started on 1 December 2023 and will run for three years. CEN/TC 251 experts play an important role in this project, specifically in the creation of a European EHRxF Standards and Policy Hub, and to make sure the users of the services of the Hub are fully supported in their needs and requirements, both inside and outside the project.

The European EHRxF stands for the “European Electronic Health Record eXchange Format”, introduced by Commission Recommendation C(2019)800 and further developed by the X-eHealth project (2020-22) and to be deployed in the MyHealth@EU cross-border infrastructure. If adopted, the European EHRxF will be a core element of the new regulation on the European Health Data Space (EHDS).

xShare envisions that everyone can share their health data in the European EHRxF with a click-of-a-button. The xShare button, featured across health portals and patient apps, allows people to exercise their data portability rights under GDPR. Hence, the European EHRxF will enable everyone to safely share their trusted health data with a click of the xShare button, which will be the driver for research and innovation in the European Health Data Space (EHDS).

In the Digital Decade policy programme, with concrete targets and objectives for 2030, the EU specifically empowers businesses and people in a human-centred, sustainable, and prosperous digital future. xShare aims to help fulfil this ambition for the health sector. With simple sharing of high-quality trusted health data, participation in the digital health economy becomes effortless contributing to digitally resilient individuals and healthier societies, where citizen science flourishes and data inform decisions in health systems.

The European EHRxF Standards and Policy Hub engages six key Standards Developing Organizations (SDOs) i.e. CEN/TC251, HL7 Europe, IHE Europe, SNOMED International, CDISC, and IEEE. It will work together with EC and national eHealth competence centers, as well as with the digital health industry, in 13 EU and EFTA member states. This partnership, sustainable-by-design, advances EHRxF development, maintenance, and adoption for the benefit of European citizens, the resilience of health systems, and the competitiveness of the European industry.

During the course of the xShare project, the Hub will support the xShare community with co-creation, research, development and harmonization of rich European EHRxF content across priority health information domains, applied in three traditional verticals in the health sector:
(1) portability of health care for continuity of care (EHDS-1, primary use of data),
(2) population health & cross-border health threats (EHDS-2, secondary use of data), and
(3) clinical research (EHDS-2 secondary use of data).
Each of these digital transformation tracks is co-led by leaders long engaged in health interoperability actions globally. Outreach to initiatives by partners outside the xShare consortium is foreseen through a set of open calls, which will receive the same level of support from the Hub in using the European EHRxF as part of their specific business driven innovation.

Horizontal activities will be dedicated to benchmarking and evaluation of EHRxF adoption within and without xShare, capacity building emphasizing data and digital literacy, procurement as well as security and privacy linked to the EHRxF in different business use cases (WP7).

With the Trust & Flow paradigm, the xShare project aims to serve as a research and innovation accelerator for the EHDS, radically advancing the quality of EHR data available for research and policy oversight. This is the essence of eStandards as infrastructure for innovation introduced in the eStandards roadmap of 2018, the evolution of which has been adopted by the European eHealth Stakeholder Group in their standards and interoperability report of 2019, which CEN/TC 251 also takes part in.

Within CEN/TC 251 a dedicated review group has been established to discuss the developments within both the XpanDH and the xShare projects, as both projects are aimed at furthering the use of the European EHRxF and will collaborate closely. We look forward to the collaboration with all partners in the xShare project and will keep you informed on the progress of the project.

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