xShare
Project description
The xShare project aims to empower individuals to share their health data effortlessly through the European Electronic Health Record Exchange Format (EEHRxF) with a simple click of the Yellow Button. By enabling data portability rights under General Data Protection Regulation (GDPR), the European EEHRxF will facilitate safe and trusted sharing of health data, thereby fostering research and innovation in the European Health Data Space (EHDS). The EHRxF is concerned with five domains explicitly referred to in the proposed EHDS regulation: e-Prescription, Patient Summary, Laboratory Report, Imaging Report, and Hospital Discharge Report.
The xShare Hub is meant to be sustainable by design and will shelter the assets that support interoperability within and between health systems in different ways, therefore enabling developers to adopt the EEHRxF. The project will also produce a wide variety of didactic and training materials adapted to each category of stakeholder in order to guarantee support for actual adoption and implementation.
The xShare consortium members gathered together in Athens, Greece in January 2024.
Why the project?
The project is an important game changer as it puts the patient at the centre, involves industry in the concrete implementation of European specifications, and connects primary and secondary use of data, thus creating an operational embryo of the upcoming European Health Data Space.
This is the first time that a project of this type will integrate the perspectives of the different domains of care, research, innovation, and public health. Each of these domains has been trying to create 'the best of possible worlds' from its own perspective, but usually ignoring what others have been doing. (As a result, these domains are today organised as silos: connecting them to some degree is usually burdensome and costly while agility is absent.) Instead, xShare has ambitions to create an ecosystem in which all actors of the health value chain will be able to interact: all actors will know in advance which data are to be made available and will thus have the capacity to test innovative use cases that show important added value. The agile identification of patients/citizens who qualify for a specific research study or a particular population health study is one of the use cases which will be tested in the project.
EHTEL's role
EHTEL is leading the project's work package related to Public Health/Population Health. Together with partners such as Charité in Germany and Sciensano in Belgium, we will mature existing use cases and identify which new public and population health use cases could be developed thanks to the wide implementation of the EEHRxF and the Yellow Button. We will be creating a large community of expertise and establish close links with other important European and national projects and initiatives such as TEHDAS, PHIRI and HealthData@EU. We will also identify the best existing "once only"practices throughout Europe to capture lessons learned and contribute to provide guidance for possible EHRxF future extensions. Dashboards with AI capabilities to support identified use cases will be installed in six locations. EHTEL will act as a key contributor to other work packages with responsibility to support the governance process of the xShare Hub, to assist the development and testing of adequate training and awareness resources, and to connect xShare with the widest possible community through targeted dissemination activities.
EHTEL welcomes its members' proactive involvement in xShare as well as interest on the part of the larger digital health environment and ecosystem!
Perspectives and next steps
The xShare consortium, co-led by MedCom (a Danish EHTEL member) and HL7 Europe (Belgium), is a diverse collaboration of stakeholders. They include standards developing organizations, industry associations, ministries of health, government agencies, SMEs, public health institutes, academic institutions, and a high-performance computing centre. The project is aligned with the EU's Digital Decade policy programme, which aims to create a human-centred, sustainable, and prosperous digital future.
The European EHRxF Standards and Policy Hub, in collaboration with six key Standards Developing Organizations (SDOs) and national eHealth competence centres, will work towards the development, maintenance, and adoption of the EEHRxF across 13 EU and EFTA member states.
To learn more, visit the xShare official website.
The project is funded under Europe's Health Programme through Grant Agreement no. 101136734
