Francis P. Crawley
Chair, CODATA IDPC & Executive Committee Member
Co-Chair, UNESCO-CODATA project ‘Developing Data Policies for Times of Crisis Facilitated by Open Science’
Co-Chair and Coordinator, CoARA-ERIP, Leuven, Belgium
Francis P. Crawley is a philosopher with a lifelong dedication to bioethics, research integrity, and global health. His contributions span research policy, AI ethics, and the development of ethical frameworks for clinical research and biobanking. A key contributor to WHO guidelines on ethics review, Good Clinical Practice, and DSMBs, he has played a pivotal role in advancing ethical standards and improving research practices worldwide. His expertise encompasses health data governance, AI ethics, and human rights in the digital age, with recent involvement in UNESCO’s initiatives on open science and crisis-responsive data policies. He has significant experience in research data and AI applications, particularly in the areas of genomics, digital twins, organoids, and data visitation, bridging cutting-edge science with ethical oversight. Francis has collaborated on health-related research projects across Africa, Asia, Latin America, and CIS countries, addressing diverse regional needs. He has advised global organizations including UNAIDS, WHO, UNESCO, WMA, and the European Commission. Over the past 25 years, he has served as a reviewer for European Commission, EDCTP, and NIH projects, and has contributed to several international ethics review committees.
The International Decade of Sciences for Sustainable Development (IDSSD, 2024–2033) calls for science-driven, data-intensive responses to crises, with UNESCO mandated to lead its implementation.
This talk presents the UNESCO-endorsed project on ‘Piloting the UNESCO-CODATA Toolkit Contributions on Developing Data Policies for Times of Crisis Facilitated by Open’ in the context of health emergencies and patient-oriented research. Building on the UNESCO Open Science Toolkit guidance, factsheet and checklist on data policies for times of crisis, the talk addresses how stakeholders can design actionable, interoperable and ethically grounded data policies for emergency preparedness, response and recovery.
We introduce how UNESCO instruments as a framework needing to be operationalised for public health emergencies by integrating three elements:
- the ENVISAGE Principles for anticipating and governing autonomous and AI-supported decision-making;
- the PILOT Principles for AI Governance, developed in the context of disaster risk reduction and crisis management;
- data visitation models that “bring algorithms to the data” in FAIR and federated infrastructures, reducing data movement while enabling secure, policy-aligned analytics in health emergencies.
The talk address ways public health surveillance, clinical research, and health-care supply chains can be embedded into crisis-ready information systems, extending previous IS-4HE&POR work on AI, interoperability, risk assessment, and decision support.
The presentation concludes with a roadmap for collaboration with health authorities, hospital pharmacists, research infrastructures, and industry partners to suggest a path forward for the development of a UNESCO pilot project by IS-4HE&POR with IEEE BIBM communities as a contribution to the UN’s UNESCO-supported International Decade of Sciences for Sustainable Development (IDSSD, 2024–2033).
Keywords: Health emergencies; open science; data visitation; AI governance; data policy; crisis informatics; ENVISAGE Principles; PILOT Principles.