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); A7 software (BE); European Health Telematics Association (BE); Diagnostikon Kai Therapeftikon Kentron Athinon Ygeia Anonymos Etaireia (EL); Universita Degli Studi Di Trento (IT); Universitat Wien (AT); Federation Europeenne Des Associations Infirmieres Aisbl (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); Spitalul Clinic De Urgenta “Bagdasar-Arseni” (RO); Singularlogic Anonymi Etaireia Pliroforiakon Systimaton Kai Efarmogonpliroforikis (EL); Siveco Romania Sa (RO); Fraunhofer Gesellschaft Zur Foerderung Der Angewandten Forschung E.V. (DE); Iatrikos Syllogos Athinon (EL);