GDI D5.6 - Report summarising the procedure for continuous stakeholder feedback gathering
Creators: name: Hooft, Rob
name: Hancock, John
name: Raspor Dall'Olio, Lucija
name: Spalding, Dylan
name: Nyrönen, Tommi
Publisher: name: Zenodo
Year: 2024
Subjects: GDI
European Genomic Data Infrastructure
1+MG
1+Million Genomes Initiative
B1MG

description: This deliverable details the currently identified important technical stakeholders for GDI, as well as existing methods and processes for interacting with them, such as identifying key contacts between GDI and other important standards-setting organisations and stakeholders. Key technical developments in GDI are reported to the 1+MG stakeholder forum, including translation of technology advancements and collaboration opportunities from the external technical stakeholders, 

 

The organisations/initiatives which we have identified as technical stakeholders are:





Global organisations whose recommendations and standards GDI may implement: 






Global Alliance for Genomics and Health (GA4GH); as the organisation establishing global standards for the management of genomic and health information




Health Level Seven International (HL7) for their HL7-FHIR™ standards, including resources and profiles, for exchanging information between clinical data resources.




The International Organization for Standardization (ISO) as organisation developing standards in genomics informatics




The Observational Health Data Sciences and Informatics network (OHDSI) for their standard and common data model supporting re-use of clinical information




The Research Data Alliance (RDA) as a way to develop and identify policies and solutions for data management and FAIR data




The World Health Organisation (WHO) who create specifications for genome data sharing




The World Wide Web Consortium (W3C) as the organisation developing standards and guidelines for the world wide web for interoperability,  accessibility, privacy, internationalisation, and security





European organisations / Laws / Initiatives for which GDI needs to consider how to interoperate:






The Data Spaces Support Center which facilitates the creation of sovereign, interoperable, and trustworthy multi-sector data spaces




The European Commission, as one of the drivers of pan-European Union requirements by setting standards for data spaces and identification of citizens.




The European Health Data Space (EHDS) legislation that establishes requirements for health-related data to be made accessible in the EHDS.




The European Open Science Cloud (EOSC), developing a platform for research data services in Europe.




GAIA-X Health, enabling citizen-centric, federated, sovereign health data spaces




The GÉANT Collaboration of European National Research and Education Networks (NRENs), for developing and maintaining interoperability standards in Information Technology.





European infrastructure projects related to GDI






EOSC4Cancer, a ‘sister’ project to GDI which brings in its use cases in GDI.




EUCAIM, developing a federated, secure, interoperable, privacy-preserving federated infrastructure for distributed analysis of cancer data




The Genome of Europe (GoE) project as one of the expected early data sources for data within the GDI





Infrastructure services that GDI depends on:






The Life Science Authentication and Authorisation infrastructure (LSAAI) as a way to federate electronic identities across a federated life science infrastructure




 

We have established processes to keep in contact among these organisations and identified individuals within key standards-setting organisations and individuals within GDI to act as key contacts with many of them. We are continuing to work with WP4 (specifically T4.3 SOPs and T4.2 European Operations) to establish the processes and procedures to both receive and give feedback to relevant stakeholders.