European EHR Exchange Format Expert Summit

In collaboration with the European Commission

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Tuesday 12 December 2023

9:00 AM – 6:00 PM CET

Brussels

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Automating generation of IPS �to ensure scale up

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Isabelle de Zegher

Co-coordinator (clinical), AIDAVA

MD, MSc

Founder b!loba

isabelle@dezegher.com

slides included in Expert Summit directory [ref]

Name

Company

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Picture of speaker

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Scaling up implementation of IPS (and EEHRxF) will be hard.

• Our personal data – at the basis of IPS - are spread across fragmented, heterogeneous systems.
• Smaller organizations will struggle to find resources and skills to develop the standard.

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We need solutions to smooth deployment for all.

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

AIDAVA �AI-based Data Curation & Publishing Virtual Assistant

Develop a digital solution, �orchestrating diverse artificial intelligence technologies, �for automated curation and publishing of personal health data, �delivering interoperable and reusable personal health records �for the benefit of patients and their physicians, � as well as for clinical researchers.

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Solution: AI based Data Curation Virtual Assistant

Overview

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Individual

Heterogenous

Data Sources

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Solution: AI based Data Curation Virtual Assistant

Details on Backend

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Individual

Heterogeneous Data Sources

Personal Health Knowledge Graph

Data Transfer Specification

Reference Ontology

IPS Standard definition in EEHRxF

International Patient Summary

Data Source Catalogue

BACKEND �(Automation)

Data source onboarding: Concept addition & mapping

Concept mapping �for IPS standard

mapping

Curation

Publishing

copy

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Solution: AI based Data Curation Virtual Assistant

Details on Backend

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Individual

Heterogeneous Data Sources

Personal Health Knowledge Graph

Data Transfer Specification

Reference Ontology

Lab Standard definition in EEHRxF

Data Source Catalogue

BACKEND �(Automation)

Data source onboarding: Concept addition & mapping

Concept mapping

for lab standard

mapping

Curation

Publishing

copy

Lab reports

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Solution: AI based Data Curation Virtual Assistant

Details on Backend

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Individual

Heterogeneous Data Sources

Personal Health Knowledge Graph

Data Transfer Specification

Reference Ontology

Specification of needed data elements

Breast Cancer Registry

Data Source Catalogue

BACKEND �(Automation)

Concept mapping �for BC registry

mapping

Curation

Publishing

copy

Personal Health Knowledge Graph

Personal Health Knowledge Graph

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Data source onboarding: Concept addition & mapping

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Recommendation 1.�Data Source Catalogue

In alignment with Article 23.3 (a) and (b) of the EHDS regulation, implement catalogues of data sources with detailed description of each data element collected by health data holders.

• Develop a standard defining the content of the catalogue of data source building on available standards.
• Mandate implementation within health data holders, within a reasonable term.
• Provide appropriate infrastructure to make these catalogue available for the generation of datasets for secondary use.

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Data Source Catalogue

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Recommendation 1.�Data Source Catalogue�Extract from catalogue of data sources in Finland

https://aineistokatalogi.fi/catalog

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Recommendation 1.�Data Source Catalogue

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Data Source Catalogue

(model, schema, ontology)

mapping

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

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Mapping �HL7 FHIR IPS

Mapping �BC registry

Other projects

AIDAVA SPHN SALUS

Precise4Q EUCAIM EHD2pilot

GDI BBMRI

SNOMED ontology framework

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Requirements (operational & strategic)

Reference Ontology

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Recommendation 2. Standard ontology �across clinical practice and clinical research

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Establish an EU-wide (or broader) ontology for semantic interoperability, and corresponding schemas for data validation & data exchange.

• Confirm requirements :
• ground core data concepts used in clinical care (e.g. patient, provider, encounter, medication, measurement, diagnose)
• extension potential for clinical research (e.g. OMOP)
• schema validation technology to support content validation
• Define and implement governance process (with existing SDO): mechanism to reliably define new types (classes) and relationships.

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Recommendation 2. Standard ontology �across clinical practice and clinical research

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Reference Ontology

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

To support smooth deployment for all of IPS (and EEHRxF) we need:

• Each health organization to document their RAW data in a catalogue of data source (similar to Finland);
• A consistent definition of all concepts used across EEHRxF defined in a (EU wide) reference ontology;
• AI based digital solutions that support automated transformation from RAW data to IPS.

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Coordination Team

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5/23/22

Michel Dumontier

Principal Investigator

Distinguished Professor

Maastricht University

FAIR Data and Services, Knowledge Graphs, Personalized Medicine

Isabelle de Zegher

Co-coordinator (clinical)

MD, MSc

Founder b!loba�Digital Health, Data Standards, Personal Health Data Sharing

Remzi Celebi

Coordinator (technical)

Researcher

Maastricht University

FAIR Data, Knowledge Graphs & Embeddings, Personalized Medicine

Gabrijela Radic �Project Management Office

Eurice GmbH

Day-to-day administrative, contractual, organisational management

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Thank you!

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

XpanDH website & Social media

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Schema layer �(from SPHN without ontology layer)

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Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.

Ontology Layer (example)

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Quantity

Unit

Value

Procedure

Agent

Site

Instrument

Subject

Time

Action

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.