Episode #001 - The Data Sharing Conundrum - with Francis P. Crawley

In this podcast, we discuss how and why we should share healthcare data,  particularly under public health emergencies, such as an early epidemic. It is fundamental that genetic and other healthcare data is shared across borders in both a timely and accurate manner before the outbreak of a global pandemic. However, as we could witness, although the COVID-19 pandemic has created a tidal wave of data, most patient data is siloed, not easily accessible, and due to low sample size, largely not actionable.   

Guest: Francis P. Crawley, Ethicist, and Philosopher. Francis is the Executive Director of the Good Clinical Practice Alliance  – Europe (GCPA) in Brussels, Belgium. He is the founder and Director of the Strategic Initiative for Developing Capacity in Ethical Review  (SIDCER). He coordinates the GCPA-SIDCER European Fellowship in Research  Ethics (EFRE). He is a philosopher who specialized in ethical, legal,  and regulatory issues in health research, having taught at several  European, Asian, and Middle East universities. He is a Data Protection  Officer (DPO) for several European Commission projects. He is a member of the Rapid Data Consortium (RAPIDDA), a VODAN collaborator, and a  member of the COVID-19 Clinical Research Coalition. He is the past  Secretary-General, Ethics Officer, and Chairman of the Ethics Working  Party at the European Forum for Good Clinical Practice. He currently chairs the methodologies sub-group of the Real Word Data Working Group at the Faculty of Pharmaceutical Medicine, Royal Colleges of Physicians.  He has acted as an author or expert for the leading international and  European research ethics and GCP guidelines, as well as for several guidelines in Asia, Africa, the Americas, and Europe.  

This show was sponsored by https://www.shivom.io/, a precision medicine data-sharing platform that allows organizations to share & analyze genetic data. The vision of Shivom is to revolutionize healthcare systems, making next-level precision medicine available to all people on earth.

You can also watch the full episode with video on YouTube: https://youtu.be/_hSuPJm7I50