Earlier this month, the lead authors of the report “International Sharing of Personal Health Data for Research” published a comment in the journal Nature Medicine. The paper, presented by members of FEAM, ALLEA and EASAC, summarises the main findings of the joint report, published last April.
The paper authored by Heidi Beate Bentzen, Rosa Castro, Robin Fears, George Griffin, Volker ter Meulen and Giske Ursin underlines the need to remove obstacles to sharing health data with researchers outside the European Union.
“COVID-19 has shown that international collaborations and global data sharing are essential for health research, but legal obstacles are preventing data sharing for non–pandemic-related research among public researchers across the world, with potentially damaging effects for citizens and patients”, the document reads.
The authors also noted that “international sharing of pseudonymized personal data among researchers is key to the advancement of health research and is an essential prerequisite for studies of rare diseases or subgroups of common diseases to obtain adequate statistical power”.