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Webinar: International Sharing of Personal Health Data for Research – 3rd June

In this webinar, FEAM, ALLEA and EASAC will present the result of their first tripartite collaboration, in which they join forces to explore how the barriers for sharing personal health data outside the EU/EEA for research in the public sector can be resolved. The joint report will be presented by the lead experts and then discussed with relevant stakeholders in a panel discussion.

Event Agenda 

14:00 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

15:30 Summary and closing remarks: Professor Volker ter Meulen, co-chair of the working group

The recording of the discussion event can be viewed, here:

If you have any questions about the event, please contact Rúben Castro: ruben.castro@feam.eu

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