Lead by Health Data Hub, WP1 provides and monitors the overall project coordination, project management, financial management, and risks and ethics management
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Work Packages
HealthData@EU Pilot is divided into 9 work packages led by different partners. Work packages 1-4 are horizontal work packages aimed at coordinating, communicating and ensuring delivery. Work packages 5-9 are technical work packages that build and test the user journey.
Horizontal work packages
PACKAGE 02
Lead by the European Public Health Association, WP2 oversees the dissemination and communication activities towards parties outside the consortium.
Related deliverables/milestones available: Project leaflet
02
PACKAGE 03
Lead by Health Data Hub, WP3 oversees the actions undertaken to verify if the project is being implemented as planned and reaches the objectives.
03
PACKAGE 04
Lead by Danish Health Data Authority (DHDA), WP4 will provide recommendations for the future EHDS and potential to scale up the tested pilot infrastructure. They will encompass both IT, legal, metadata and data standards and economic principles.
04
Technical work packages
PACKAGE 05
Co-lead by Health Data Hub and the Health Data Lab, WP5 will lead the implementation of the IT infrastructure enabling information exchange between nodes in an agnostic way in order to allow data processing (DCAT, data…) among nodes. The infrastructure will use and specify an eDelivery protocol and provide discovery services. WP5 will also provide hosting solutions.
Related deliverables/milestones available: Proof of concept communication
05
PACKAGE 06
Lead by Sciensano, WP6 will focus on standardising the descriptive metadata templates used to present and describe the available data collections in every node. The standard for this common descriptive metadata model will be based on a health DCAT-AP extension that will also be designed in this WP.
First results
Report on the landscape analysis of available metadata catalogues and the metadata standards in use
The main goal of WP6 is to create a standardised way of describing health-related datasets that aligns with the FAIR principles and meets the needs of EHDS users. This involves designing a specialised extension of the European DCAT-AP standard, aka healthDCAT Application Profile, designed specifically for the healthData@EU infrastructure. The healthDCAT-AP will retain the foundational structure and concepts of DCAT-AP, while incorporating additional classes and metadata elements to suit the unique needs of the health domain.
The purpose of HealthDCAT-AP is to streamline data exchange within the healthData@EU ecosystem and ensure interoperability with other EU data spaces as laid down by the EHDS Regulation proposal.To kick off this process, WP6 conducted a thorough analysis of existing metadata models and health catalogues. The resulting landscape analysis report covers several key points:An inventory of current metadata catalogues, including details such as the metadata standard used, software utilised, API, and URL.
Identification of metadata catalogues and registries already discoverable through the EU open data catalogue. Discussion of the DCAT-AP metadata standard, its existing extensions, and the challenges faced by data providers in implementing it effectively. To gather information for this analysis, WP6 designed an online form with five questions, which was completed by consortium partners and data providers.
The findings from this analysis revealed several key insights:
- The landscape of metadata catalogues is complex and diverse.
- There are relatively few metadata catalogues that comply with the DCAT-AP standard.
- Operational and interoperable metadata catalogues are limited in number.
- There is a clear need for capacity building in the field of health data to facilitate the creation of DCAT-AP compliant metadata records and catalogues.
For further details, refer to the Landscape analysis report.
Technical working group on the transition from existing metadata templates to HealthDCAT-AP – Working group minutes
A Technical Working Group (TWG) was established, holding bi-monthly sessions from June to December 2023. Comprising approximately 80 participants, including HealthData@EU pilot consortium representatives and external health stakeholders, the TWG convened to provide essential support.
Across 12 sessions, discussions centred on determining the properties crucial for enhancing health data description and ensuring interoperability of metadata catalogues within the HealthData@EU infrastructure.The TWG’s activities started with two foundational sessions led by EC DIGIT’s Unit B2, succeeded by 10 sessions led by Sciensano. Each session, focused on specific EU Survey forms, facilitated structured discussions. These surveys, open for 10 days, garnered extensive input, meticulously reviewed for insights shared in subsequent TWG meetings.
For further details, refer to the minutes of the Technical Working group, available here.
06
PACKAGE 07
Lead by BBMRI-ERIC, WP7 will provide guidelines in order to build a single data access form for the EHDS, to harmonise legal and ethics data access procedures, security requirements and GDPR citizen access rights compliance for cross-border use of data applied to selected use cases
First results:
- Legal landscape analysis (download the summary)
- Find out more on the design of the common data application form (download the full report and forms)
07
PACKAGE 08
Lead by BBMRI-ERIC, WP8 deals with interoperability of actual data in different phases of HealthData@EU User Journey: from a study of different common data models, available terminologies and how to make data interoperability between nodes, to data exchange among HealthData@EU Nodes and ultimately data delivery to the researchers. It also deals with quality controlling and more generally quality assurance mechanisms that are to be implemented by the HealthData@EU Nodes. The subject of federated queries to obtain new metadata, such as aggregate availability data, is addressed through a feasibility study. WP8 has relations with respect to standards recommended and piloted by WP5 and WP6 and will closely work with WP7 on legal matters (aspects for standards, legal bases for data processing).
08
PACKAGE 09
Co-lead by the Health Data Hub and the Danish Health Data Authority, WP9 will coordinate the implementation of use cases chosen by the European Commission among consortium proposed use cases (building teams, project management, and allocation of resources). This WP will also ensure project management for the implementing common data model designed by WP8 on chosen data use cases and for filling up the HealthDCAT extension and metadata catalogue on selected use cases.
All details regarding HealthData@EU use cases are available here.
