Discussion Event for ALLEA-EASAC-FEAM Report on “International Health Data Transfer”

In this webinar, three European academy networks 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

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

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

Report: International Sharing of Personal Health Data for Research

In this report, ALLEA, the European Academies’ Science Advisory Council (EASAC), and the Federation of European Academies of Medicine (FEAM) discuss how global sharing of health data benefits public research, describe the challenges imposed by the GDPR, and provide possible solutions through adapting or expanding the existing legal framework. Read the report here