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CORDIS - Risultati della ricerca dell’UE
CORDIS

Expanding the European EHRxF to share and effectively use health data within the EHDS

CORDIS fornisce collegamenti ai risultati finali pubblici e alle pubblicazioni dei progetti ORIZZONTE.

I link ai risultati e alle pubblicazioni dei progetti del 7° PQ, così come i link ad alcuni tipi di risultati specifici come dataset e software, sono recuperati dinamicamente da .OpenAIRE .

Risultati finali

Monitoring framework on national  EEHRxF uptake and EHRxF Standards Hub performance - 1 (si apre in una nuova finestra)

Sets out the framework with indicators to monitor the EEHRxF adoption within Member States, as well as the performance of the EHRxF Standards Hub 

Project Handbook & Quality Plan  (si apre in una nuova finestra)

Project method for planning and coordinating project activities according to the project’s obligations and requirements. A dedicated section on the quality plan and associated procedures for reporting in a qualitative way will be included 

Proposed interoperability specification for an International Patient Summary for Research mapped to international standards - 1 (si apre in una nuova finestra)

An interoperability specification for an International Patient Summary for Research (IPS-R) mapped to international standards will be proposed

xSHARE Communication, Dissemination and Stakeholder Engagement Plan - 1 (si apre in una nuova finestra)

The first document outlining the plan for Communication, Dissemination and Stakeholder engagement activities. The deliverable is updated during the project to align with the needs of the project and stakeholders.

xShare Data portability business use cases, validation process, and localization requirements - Final (si apre in una nuova finestra)

This deliverable will document of the co-creation process run between the 8 adoption sites/settings and the European Standards and Policy Hub that will specify how the rights of citizens on portability of their health data under GDPR is made a reality.

Annual EHRxF Standards Hub Work Plans - Y2 (si apre in una nuova finestra)

This document details the activities to be undertaken by the Hub, as well as a review of the activities carried out in the previous period. (T2.1) It will include updated collaboration guidelines with the industry (contribution from DE/MedTec) and regulators (Contribution MoH-NL, ISCTE) to facilitate open collaboration with industry organisationsand regulators that allows for the exchange of best practices, examples and used tools  (T2.4)

The industry xShare label (si apre in una nuova finestra)

The report will consider the status of the EHDS regulation and Art 23, and consider the case for an xShare label to demonstrate compliance with the EEHRxF

Public health Threads: state of the art, needs analysis and use cases  (si apre in una nuova finestra)

This report will provide an overview on what has been achieved so far on the different public/population health priorities at Member State, Europe, and Globally. Based on needs and gaps identified a priority list of business use cases and data sets will be prepared 

xSHARE Communication, Dissemination, Stakeholder Engagement Plan - 2 (si apre in una nuova finestra)

The second document outlining the plan for Communication, Dissemination and Stakeholder engagement activities. The deliverable is updated during the project to align with the needs of the project and stakeholders.

EHRxF in a nutshell  (si apre in una nuova finestra)

This introduction to the EHRxF will educate the interested reader in the proposed way in which the EHRxF can transform the delivery of care and the role of the patient (T2.2) 

Analysis of business use cases for use of EHRxF HIDs in clinical research (si apre in una nuova finestra)

Business use cases will be analysed o with focus to real-world data items of greatest value to clinical research and proposals for a research extension to the IPS (IPS-R)

"Quarterly Multimedia Newsletter ""in the hub""" (si apre in una nuova finestra)

The multimedia newsletter will report on xSHARE activities to multistakeholder EEHRxF Community of Excellence (T8.3)

The vision for a xShare label: liberating Health data (si apre in una nuova finestra)

Initially a vision for the label’s potential as an assurance mark for citizens and patients to easily share personal health data

xShare toolbox for data portability under GDPR - Interim 2 (si apre in una nuova finestra)

This deliverable will report on the developments of the xShare toolbox for data transformation, pheudonymization data donation from UNINOVA, FORTH, GNOMON and other SMEs wishing to contribute to the Hub, the toolbox will be delivered to the Hub

xShare Data portability business use cases, validation process, and localization requirements - Interim (si apre in una nuova finestra)

This deliverable will document of the co-creation process run between the 8 adoption sites/settings and the European Standards and Policy Hub that will specify how the rights of citizens on portability of their health data under GDPR is made a reality.

xShare Communication, Dissemination and Stakeholder Engagement Report - 1 (si apre in una nuova finestra)

The first report documenting and evaluating the Communication, Dissemination, Stakeholder engagement and exploitation activities. It will provide suggestions for the communication, dissemination and stakeholder engagement activities, as well as input into the Exploitation plan & Market Analysis.

Charter of the European EHRxF Standards Hub  (si apre in una nuova finestra)

This document marks the official start of the Hub and should have the endorsement of the key stakeholders.  (T2.1) 

xShare toolbox for data portability under GDPR - Interim 1 (si apre in una nuova finestra)

This deliverable will report on the developments of the xShare toolbox for data transformation, pheudonymization data donation from UNINOVA, FORTH, GNOMON and other SMEs wishing to contribute to the Hub, the toolbox will be delivered to the Hub

Annual EHRxF Standards Hub Work Plans -Y1 (si apre in una nuova finestra)

This document details the activities to be undertaken by the Hub, as well as a review of the activities carried out in the previous period. (T2.1) It will include updated collaboration guidelines with the industry (contribution from DE/MedTec) and regulators (Contribution MoH-NL, ISCTE) to facilitate open collaboration with industry organisationsand regulators that allows for the exchange of best practices, examples and used tools  (T2.4)

Data Management Plan  (si apre in una nuova finestra)

It shall be focused on the different data to be gathered. It shall cover topics like: (1) information about the data and data format, (2) metadata content and format, (3) policies for access, sharing and re-use and (4) long-term storage and data management.

X-Bundles  for HIDs in selected Business use cases - 1 (si apre in una nuova finestra)

Open collections of common content specifications, common service components, adoption support components  organized by HID and Business case and linked to the business use case registry.

Business Use Case Registry  (si apre in una nuova finestra)

An open registry of business use case descriptions and associated requirements will be made available for public information, considering the eStandards use case repository (T2.2)

Proposal for a harmonized core data set across health care, population health and clinical research.   (si apre in una nuova finestra)

An initial analysis of core data elements will be performed to select a subset that should be harmonized across the domains of healthcare, population health and clinical research

X-Bundles  for HIDs in selected Business use cases - 2 (si apre in una nuova finestra)

Open collections of common content specifications, common service components, adoption support components  organized by HID and Business case and linked to the business use case registry.

xSHARE Website (si apre in una nuova finestra)

The website of the project, constituting the main platform for the external communication and presentation of the project results

xShare Button Demonstrators - Interim 1 (si apre in una nuova finestra)

This deliverable will be a demonstrator of the xShare Button concept in different business settings with engagement of adoption sites to serve as guidance to the Open calls, Gnomon (IDIKA, HSE), TicSalut, TTSA, FTGM, and UCY, SRS will contribute.

Pubblicazioni

Towards EHDS Compliance in Europe to Support Public Health (si apre in una nuova finestra)

Autori: Eugenia Rinaldi, Luc Nicolas, Nienke Schutte, Sasha Milbeck, Sylvia Thun, Catherine Chronaki
Pubblicato in: Studies in Health Technology and Informatics, Intelligent Health Systems – From Technology to Data and Knowledge, 2025, ISBN 978-1-64368-596-0
Editore: IOS Press
DOI: 10.3233/SHTI250609

Standards in sync: five principles to achieve semantic interoperability for TRUE research for healthcare (si apre in una nuova finestra)

Autori: Rhonda Facile, Catherine Chronaki, Peter van Reusel, Rebecca Kush
Pubblicato in: Frontiers in Digital Health, Numero 7, 2025, ISSN 2673-253X
Editore: Frontiers Media SA
DOI: 10.3389/FDGTH.2025.1567624

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