The Microsoft-Universitat de València Chair for Privacy and Digital Transformation, the CHAIMELEON Project and the EUCAIM Project organise the event “Health Research and secondary uses: Facing European Health Data Space Regulation”. It is based on online working groups developed through webinars and a final hybrid event.
The aim of this activity will be to discuss the requirements for future health or healthcare research and secondary use of data activities. In addition, the European Regulation on the Health Data Space, which is now in the procedural phase, needs to be considered. To achieve the best results, we propose to organise sectoral panels and a closing session. Each of the panels should be led by two people and will be carried out online. The final event would take place in Madrid at the headquarters of the European Union.
This activity is intended to be deployed in two stages. The first one will be carried out through a set of webinars with the aim of analysing relevant aspects of the future European Health Data Space Regulation. These panels, which will be recorded and transcribed, seek to obtain relevant information from experts and the community of recipients and beneficiaries of the regulation. Each of them will generate a summary document.
The activity will conclude with a hybrid meeting in which the results obtained will be shared and the impact of the regulation will be addressed from the points of view of different stakeholders.
REGISTRATION DETAILS: Click here to register.
Online satellite events
Each of these satellite events will be structured as follows:
- The panellists will have to summarise their positions for a total of one hour, with speaking time allocated according to the number of speakers.
- The second hour will be devoted to an open discussion among experts. The main purpose of the discussion shall never be to ask questions or to raise doubts. We seek to obtain opinions, contributions and comments that will enrich our knowledge.
- An online space will be opened in Teams to allow all attendees to formulate written considerations in the following three days.
- Each of the contributions made will be considered and included in the report to be prepared by the chair and coordinated by the scientific secretary.
Innovating European Laws: a new legal and ethical framework for health electronic health data secondary uses. Date: 27/11/2024. Scheduled time 13.00-15.00 (GMT+1:00, UTC+01:00)
- Janos Meszaros (Postdoctoral Researcher at KU Leuven)
- Ricard Martínez (Microsoft-Universitat de València Chair for Privacy and Digital Transformation)
- Regina Becker (ELSI Fellow (Ethical, Legal and Social Implications), Luxembourg National Data Service (LNDS)
- Maria Pilar Nicolás Jiménez (Senior Permanent Researcher. Public Law Department. Faculty of Law. University of the Basque)
Pseudonymisation v. Anonymisation. Quality of data and secondary uses. Date 03/12/2024 Scheduled time 13.00-15.00 (GMT+1:00, UTC+01:00)
- Jose Munuera (Data Scientist at QUIBIM)
- Rocío Catalán Flores (Biomedical Engineer at the La Fe Health Research Institute)
- Ricard Martinez (Microsoft-Universitat de València Chair for Privacy and Digital Transformation)
Legal grounds for secondary uses in health data reuse: from consent-data altruism and public interest to opting out rules. Date 05/12/2024.Scheduled time 13.00-15.00 (GMT+1:00, UTC+01:00)
- Ricard Martínez (Microsoft-Universitat de València Chair for Privacy and Digital Transformation, EUCAIM & CHAIMELEON Project)
- Tapani Piha, Member of Team Europe Direct in Finland, Special Advisor for EU Health Policy and Digital Health in FIPRA
- Valentina Colcelli (Senior Researcher at National Research Council (Italy) Institute CNR-IFAC)
- Magdalena Kogut-Czarkowska (Counsel at Timelex. Legal researcher at Ghent University- Belgium)
Data Holders Challenges. Date 11/12/2024Scheduled time 13.00-15.00 (GMT+1:00, UTC+01:00)
- Enrique Bernal Delgado (Quantum Project – IACS Data Science for Health Services and Policy Research)
- Ignacio Blanquer (EUCAIM Universitat de Politècnica de València)
- Silvia Flor Arnal (Chaimeleon Project).
Authorised participants: the European infrastructures roles (online)Date 17/12/2024 Scheduled time 13.00-15.00
- Alma Virto (PhD legal researcher at the IRTIC University of Valencia)
- Ricard Martínez (EUCAIM, Microsoft-Universitat de València Chair for Privacy and Digital Transformation)
- Regina Becker (ELSI Fellow (Ethical, Legal and Social Implications), Luxembourg National Data Service (LNDS)
- Petr Holub (BBMRI-ERIC’s IT & Data Protection Manager)
Final Hybrid Event
This event should include experts from all the sectors involved and, above all, researchers, governments and data protection authorities. The profile of the experts should include the areas of privacy, artificial intelligence, security, data science, ethics and governance, among others. Within this framework, a seminar is designed with the following objectives:
- To define the requirements that data lakes for health research should meet, taking into account, the current legislation and the developing framework.
- To reflect on the strategic definition of data governance frameworks.
- To consider the state of progress of the European Regulation proposed by the Commission.
Details:
Scheduled date: 16 January 2024.
Type of event: hybrid.
City: Madrid
Agenda:
- 8.30 – Registration
- 09.30 – Opening session
- 10.15 – European Health Data Space Regulation: regulatory and public policies challenges.
- 11.45 – Satellite events main conclusion
- 12.30 – Lunch
- 13.30 – Health research: what do patients need?
- 14.15 – Technology, security and robustness: secure data spaces
- 15.00 – Coffee Break
- 15.30 – Research, innovation and entrepreneurship opportunities for data reuse
- 16.30 – EHDS Public Healthcare Systems impact
- 17.30 – Closing Session
- 18.00 – Networking Coffee