Day 1: October 16th, 2024

13:00 – 14:00 – Registration Opening & Coffee Break

14:00 – 15:30 – Opening Plenary – Session 1 – Plenary 1 “Update on regulations”

CNIL : AI Act + Biomedical Research Reference Methodologies EDPB : Updated anonymization guidance OTHER EU Authority 

• In France, CNIL has carried out a public consultation to improve its Reference Methodologies on biomedical research. It has also put in place a team dedicated to the use of Artificial Intelligence, a technology now widely used in healthcare and medical research.
• At the EU level, the European Data Protection Board is working on new anonymisation and pseudonymisation guidelines
• Several national authorities are working on updating their regulatory framework to prepare the implementation of the European Health Data Space

15:30 – 16:00 – Coffee Break

16:00 – 17:30 – Workshops Sessions

16:00 – 17:30 Session 2 – Panel Discussion 1 – International Data Transfers

This panel will be dedicated to exploring the challenges relating to the transfer of health data in general and in particular in the context of scientific research. The session will combine academic and practical considerations on transfer tools and transfer impact assessment.

These are the topics or questions we intend to address:

• The challenges of implementing Standard Contractual Clauses, particularly the famous module 4 processor to Controller and the implications of the recent Dutch DPA decision sanctioning uber.
• The European Commission has (finally)  launched an initiative to update Standard Contractual Clauses (SCCs) for the transfer of personal data to third-country controllers and processors under the GDPR. Was it worth the wait?
• The Challenges linked to the frame of data transfer within the complex processing chain of some clinical trials.
• What place for the other data transfer tools and mechanisms such as BCRs ?
• Reliance on Derogations for scientific research. Is it a viable option ?
• Clarifying the purpose of the Transfer Impact Assessment and the implementation of supplementary measures for “problematic” countries.

16:00 – 17:30 Session 3 – Workshop 1 – Tutorial : Certifications and codes of conduct

This workshop aims to highlight:

16:00 – 17:30 Session 4 – Workshop 2 – Training & Education

This panel discussion will discuss the need for specific training and education for DPO and Privacy Officers working in healthcare and biomedical research:

• What kind of education is needed for DPO and Privacy Officers involved in the processing of personal health data?
• Should health data specific certification frameworks be developed?
• How could an European training program for Health Data Protection look like?