Currently, citizen’s health data are stored in different IT systems scattered among several hospitals and healthcare providers. In order to better support the continuity of care, several European countries are adopting national or regional Electronic Health Records (EHRs), i.e. interoperability infrastructures that connect the EMRs (Electronic Medical Records) of different health providers (e.g. different hospitals), in order to realize virtual or centralized national repositories of citizen’s health records, even populated directly by the citizens (via Personal Health Records). But today, citizens moving across Europe have very limited control on their own health data, spread out in different silos. Legal constraints may prevent controllers of these silos from exchanging the managed data, even in anonymized way, without the intervention of higher authorities. As a consequence, health data cannot be fully exploited for healthcare and research.
Directive 2011/24/EU on patients’ rights promotes exchange of information among European states, but a full integration among European states is still far from being realized. As such, this 24 months H2020 EU project, in which the EFN is a partner, is aiming to empower the citizen and unlock health data from local silos, using a bottom-up approach for EHR Interoperability.
Coordinated by Engineering Ingegneria Informatica (Italy), this project objective is to realise an open, standardized and unique European extended-EHR to preserve the European assets and professional ways of working, by addressing the current lack of standardization and security, defining a set of integrated protocols and conformance criteria for mobile apps, supporting secure and portable local storage and backup, released as open specifications. Moreover, the project will integrate these new protocols with technologies for information extraction and translation, to reduce the difficulties in health data exchange related to the different terminologies and languages adopted in different European countries and by different healthcare providers.
The solution aims to provide European citizens with a complete view of their health history, shareable with health operators and researchers, by means of a multi-alternatives strategy based on: (1) the adoption of Personal EHRs, (2) the incremental integration of existing EHRs, (3) the support of different levels of interoperability, (4) the usage of blockchain and a decentralized architecture, (5) the human aspects governance.
Partners: Engineering – Ingegneria Informatica Spa (IT); Andaman7 (BE); European Health Telematics Association (BE); DTCA Hygeia – Diagnostic and Therapeutic Center of Athens (EL); University of Trento (IT); University of Vienna – School of Law (AT); European Federation of Nurses Associations (BE); Fondazione Toscana Gabriele Monasterio per la Ricerca Medica e di Sanitapubblica (IT); Centre Hospitalier Universitaire de Liege (BE); Ubitech Limited (CY); University of Piraeus Research Center (El); “Bagdasar-Arseni” Clinical Emergency Hospital of Bucharest (RO); Siveco Romania Sa (RO); Fraunhofer Institute for Software and Systems Engineering (DE); Iatrikos Syllogos Athinon (EL); Byte Computer S.A. (EL).
- “Unleashing personal health data for care and research: The InteropEHRate approach” (April 2021) – provides an overview on how to enable a citizen-centric approach and what technical solutions is InteropEHRate developing; and explains that the main obstacles to health data sharing are the lack of access to health data, identity and consent management, and the inability to donate data for research purposes.
- “Real-world evidence in health and care research – The contribution of InteropEHRate” (December 2021) – explores the background to real-world data challenges in health and care, and draws attention to the growing impetus of hybrid approaches to health and care data collection. This White Paper presents the InteropEHRate research platform composed by the research data sharing protocol, InteropEHRate Research Services and a reference implementation, and how research institutions benefit from these solutions.
- “Towards interoperable health data” (May 2022) – addresses challenges related to European health data exchange across institutions, regions, and countries, drawing its arguments from a series of meetings held with experts in semantics and other fields.
- Newsletter #1 (March 2021)
The flyer (available here) provides the project goals, technical approach, and expected results.
>> For more information on the project, visit the project Website.