IDEA4RC EVENT

Intelligent ecosystem to improve the governance, the sharing, and the re-use of health data for rare cancers.

3rd Plenary meeting Madrid 22-23 November 2023

Plenary session: 22/11/2023 ​

TimeTopicChair
09.15-09.45Venue of participants & welcome coffee
09.45-10.30LifeSpace visitUPM
10:30-11:00IDEA4RC objectives and progresses
- what is expected by end of 2024		INT - A. Trama
11:00-11:30Introduction to legal aspects
- Data access/data sharing agreements explanation
- current status of discussions
- next steps
Discussion and assignment of works and responsibilities
ECCP – Tsiompanidou
11:30-12:00WP3, 4, 5
- Data capsules: what they are, what pilot sites are expected to do
- Data flow
Discussion and assignment of works and responsibilities		UPM – E Gaeta
12:00-12:30Data preparation
- Management of unstructured data
- Management of structured data
- Data annotation (HNC and sarcomas)
Discussion and assignment of works and
responsibilities		UDEU – A. Almeida
12:30-13:15WP9
Implementation at pilot sites
- Current status and major open issues and roadblocks
- Proposal and agreement on the plan to address major open issues and roadblocks (assignment of work and responsibilities; deadlines; Pilot sites involvement; technical support)		MME – F. Mercalli
13:15-14.00Lunch break (talks among partners)
14:00-14:30Data search (Navigator)
- Data navigator concept
- Data navigator implementation
Q&A – discussion and assignment of works and responsibilities		UPM – L. Lopez
14:30-14:45- The Federated data analysis concept
Discussion and assignment of works 		IKNL – Eva Mezei
14:45-15.15The IDEA4RC governanceINT - A. Trama
15:15-15:30 The IDEA4RC data governance layer (WP7)
- EHDS data permit		CERTH
15:30-15:45Stakeholders engagement
- Activities foreseen for the next months		ACC/DIGICORE – D. De Persis
15:45-16:00Short break
16:00-16:30Coordination aspects
- Due deliverables and results
- modification of PM distribution and WP7 description
- planning review (preparation actions)
- Issue from Norwegian partner for data access (new partner to be added?)
- any other issues		INT - E. Martinelli
16:30-17:00Summary of day and plans for thematic sessions tomorrow
- date for next meeting		INT – A. Trama

Thematic sessions: 23/11/2023 from 8.30am to 1.30pm. ​

GroupsTimeTopicChair
ALL08:30-09:00Split of groups
- Virtual navigator (clinicians + UPM + UDEU + MME?)
- Technical group (all tech partners)
- Legal group (ECCP, INT, legal from clinical partners, NIO)
Room 1
Room 2
Room 3
Group 1
(clinical)		09:00-10:30Data navigator, data access etc.
Data annotation and data preparation
Assignment of responsibilities and deadlines		UPM- L. Lopez
Group 2
(technical)		09:00-10:30Capsule next steps: FHIR, OMOP and Vantage6 integration - UPM
How to: populate the Capsules - ENG/INT
Data model and NLP algorithms - UDEU/FBK		UPM- E. Gaeta
ENG/INT - V. Falanga/P. Baili
UDEU/FBK
Group 3
(Legal)		09:00-10:30Data processing and data sharing agreementsECCP – V. Tsompanidou
ALL10:30-11:00Summary of the group discussions and end of the plenary meetingINT – A. Trama
UPM - E. Gaeta
11.00- 11.30Coffee break
ALL11.30-13.30Scenarios definition workshop
(agenda to be provided by University of Utrecht)
UU – C. Egher, S. van Hees
13.30Lunch break

Social Event

Dinner on the 22 (20:15h)

Meeting Rooms

  • November 22
    •  Boardroom (A-128.2) for plenary session
    • Hall of building A for coffee breaks
    • Hall of building C for lunch break
  • November 23:
    • Rooms A-129, A-130 and A-131 for group sessions
    • Room A-127 for joint debriefing
    • Hall of building A for coffee break

Wifi

  • Eduroam Service: for the UPM community and for eduroam users roaming.
  • InvitadosUPM Service: for the event.
    • Event: Proyecto IDEARC
    • User: idearc
    • Password: Miproyecto123

Zoom Links