International Health Data Transfer, publication

Watch Recording: Webinar on “International Sharing of Personal Health Data for Research”

On 3 June, ALLEA, EASAC and FEAM co-organised an online discussion event to present the results of their first tripartite collaboration, in which they join forces to explore how barriers for sharing personal health data outside the EU/EEA for research in the public sector can be resolved. The joint report was be presented by the lead experts and then discussed with relevant stakeholders in a panel discussion. 

Event Agenda  

Introduction and presentation of academy networks 

Welcome by Professor Christina Moberg, President of EASAC 

Presentation of the project 

Chair: Professor Antonio Loprieno, President of ALLEA 

  • Why we did this project together; what is the value of international health research and what may now be lost – Rosa Castro, FEAM Policy Officer 
  • Main findings from the project – Professor Giske Ursin, Cancer Registry of Norway; and Dr Heidi Beate Bentzen, University of Oslo 

Panel discussion 

Chair: Professor George Griffin, President of FEAM and co-chair of the working group 

Short interventions followed by questions and discussion 

  • Professor Robert Eiss, US National Institutes of Health 
  • Brendan Barnes, EFPIA – European Federation of Pharmaceutical Industries and Associations 
  • Gözde Susuzlu Briggs, Data Saves Lives/European Patients’ Forum 
  • Professor Christiane Woopen, Professor of Ethics and Theory of Medicine, chair EGE 
  • Alisa Vekeman, European Commission, DG Justice 

Summary and closing remarks 

Professor Volker ter Meulen, co-chair of the working group