Data Policy in Times of Crisis

The need for data policy in times of crisis

Public Workshop organised by the CODATA International Data Policy Committee on 24 October 2022, 13:30 – 17:00 CEST as part of the 2nd FAIR Convergence Symposium (refer to this page for the Symposium programme overview).

Location: Collegezaal 2, LUMC, and online.

In case you missed the event, you can watch the workshop recording in CODATA Vimeo and check the presentation decks.

Background Note and Rationale

Recent health emergencies, natural hazards, and geopolitical crises have demonstrated the need for evidence-informed decision-making in local, national, regional, and global preparedness and response measures. Recent pandemics/epidemics (COVID -19, Ebola, MERS), natural hazards/disasters (droughts in Europe, Africa, China, USA; floods in Europe, Pakistan, Bangladesh; earthquakes in Papua New Guinea, Peru, Japan), and geopolitical conflicts (Ukraine, Afghanistan, Syria, Yemen, Burkina Faso, Haiti) point to the need for increased data comprehensiveness, integrity, and transparency as well as for more robust ethics and scientific frameworks supporting data policy in crisis situations.

Robust data policy contributes to more efficient interdisciplinary and cross-sector collaboration in disruptive or disaster situations that threaten lives and the public wellbeing. This data policy must be informed and reliable, developed according to ethics and human rights principles, and supported by sound scientific methodology.

Data policy plays a crucial role throughout the phases of a crisis situation: before, during and after. Data policy is critical to ensure better preparation, effective responses, and resilient recovery from a crisis. The effectiveness and acceptability of security and public health interventions in response to crises, as well as the need for democratic, inclusive, and informed debate – require stronger frameworks for developing and implementing data.

Crucial in crisis situations multidisciplinary is collaboration through data incorporating an all-hazards approach for building comprehensive science-based evidence. Well-developed and robust data policy is essential to grounded and efficient decision-making in cases of system disruption and/or disaster.

Data policy provides contributes to a governance framework where data gathering and data processing are managed for furthering the development of the science, for use by science, and as a contribution to economic, social, and political decision-making.

Data policy must promote cross-discipline and cross-sector integration of data in crisis situations through implementing cross-cutting frameworks for data generation, data processing, and data sharing: the FAIR Data Principles, data integrity, data stewardship, data ethics and Open Science.

Building on the International Science Council (ISC)’s vision, this workshop centres on science as a public good, including in times of serious health, natural, and geopolitical disruptions to stable social environments. Well-developed and documented data policy for crisis situations is of vital importance to ensuring that science plays a strategic role in local, national, regional, and global preparedness and response to significantly disruptive or disaster situations.

Workshop Objectives

This workshop has three principal objectives:

to examine the scientific, political, and societal frameworks needed to develop data policy with a view towards addressing crisis situations;
to consider the underlying ethical, human rights, and humanitarian frameworks needed to support data policy during crisis situations; and
to support and develop tools that promote the responsible practice and use data when generating scientific evidence in crisis situations.

Workshop Agenda

Chairpersons

Francis P. Crawley, Chair, International Data Policy Committee (IDPC), CODATA; Steering Committee, Ukraine Clinical Research Support Initiative (UCRSI); Executive Director, GCPA & SIDCER
Professor Virginia Murray, Executive Committee Member, CODATA; Co-chair, Disaster Loss Data (DATA), Integrated Research in Disaster Risk (IRDR); Co-chair, Thematic Platform for Health EDRM Research Network, World Health Organization (WHO); and Head, Global Disaster Risk Reduction, UK Health Security Agency (UKHSA), United Kingdom

Rapporteur

Professor B. Burcak Basbug Erkan, Department of Statistics, Middle East Technical University (METU); Academic Partnerships Director, Institute of Civil Protection and Emergency Management (ICPEM), United Kingdom

13:30	Introduction and overview of the workshop Dr. Simon Hodson, Executive Director, CODATA; Paris, France Francis P. Crawley, Chair, International Data Policy Committee (IDPC), CODATA
13:40	Session 1 The need for data policy in mapping crises Guiding questions Every crisis requires data collection and analysis for understanding and mapping the impact and outcomes: are there data policy tools for the following: 1. for preparedness based on the crises as they arise? 2. for ensuring the most appropriate response? 3. for building of knowledge specific to that crisis – do we have the information, capacities and research frameworks that are required? Presenter (10 minutes) Professor Virginia Murray, Executive Committee Member, CODATA; Co-chair, Disaster Loss Data (DATA), Integrated Research in Disaster Risk (IRDR); Co-chair, Thematic Platform for Health EDRM Research Network, World Health Organization (WHO); and Head, Global Disaster Risk Reduction, UK Health Security Agency (UKHSA), United Kingdom Panellists Dr. Ana Persic, Program Specialist, Science Policy and Partnerships Section, Division of Science Policy and Capacity Building, UNESCO; Paris, France Professor Mariel Borowitz, Sam Nunn School of International Affairs, Georgia Institute of Technology, USA; CODATA IDPC Dr. Animesh Kumar, Head of Office, United Nations Office for Disaster Risk Reduction (UNDRR), Bonn, Germany Professor Emily Y.Y. Chan, Professor and Assistant Dean (Global Engagement) at Faculty of Medicine, The Chinese University of Hong Kong (CUHK); Director of the Collaborating Centre for Oxford University and CUHK for Disaster and Medical Humanitarian Response (CCOUC), the Centre for Global Health (CGH), the Centre of Excellence (ICoE-CCOUC) of Integrated Research on Disaster Risk (IRDR) Dr. Ryoma Kayano, Technical Officer, Health Emergency and Disaster Risk Management (Health-EDRM), World Health Organization, Kyoto, Japan
14:20	Session 2 Data generation, data processing, data sharing, and the role of the FAIR Data Principles in data policy responding to crisis situations Guiding questions How do we define the purpose and organisation of data in crisis situations? 1. What are the purposes for data generation and data processing that data policy should consider in crisis situations? 2. How can data policy contribute to the generation and processing of robust and reliable data with a high utility and assured integrity in crisis situations? 3. What is the role of data policy in contributing to the FAIR-‘ification’ of data in a crisis situation and the convergence of that data with larger data sets and Open Science? Presenter (10 minutes) Professor Barend Mons, Professor of BioSemantics at the Human Genetics Department of Leiden University Medical Center; Founder & Co-lead, GO FAIR; The Netherlands; President, CODATA Panellists Professor Christine Kirkpatrick, Division Director of Research Data Services for the San Diego Supercomputer Center, USA; Secretary General, CODATA Professor ZHANG Lili, Computer Network Information Center, Chinese Academy of Sciences, Beijing, China; Member, International Data Policy Committee (IDPC), CODATA Dr. Iryna Kuchma, Open Access Programme Manager, Electronic Information for Libraries (EIFL), Kyiv, Ukraine
15:20	Health Break
15:30	Session 3 Data ethics, data policy, Open Science, and decision-making in crisis situations Guiding questions 1. What role does data ethics play in data policy in crisis situations? 2. What are the challenges to Open Data and Open Science in a crisis situation? 3. What is needed in developing data policy to ensure informed decision-making in crisis situations? Presenter (10 minutes) Professor Paul Arthur Berkman, President, Science Diplomacy Center™; Associated Fellow, United Nations Institute for Training and Research (UNITAR); Faculty Associate, Program on Negotiation, Harvard Law School, USA; Member, CODATA IDPC Panellists Professor Thalia Arawi, Associate Professor of Bioethics and Bed Side Ethics, Founding Director, Salim El-Hoss Bioethics & Professionalism Program (SHBPP), American University of Beirut & Medical Center, Faculty of Medicine, Beirut, Lebanon; Member, WHO COVID-19 Ethics Review Committee Professor Perihan Elif Ekmekci, MD, PhD, Head of History of Medicine and Ethics Department, Deputy Dean of the School of Medicine, Head of the Institutional Review Board, TOBB University of Economics and Technology, Ankara, Turkey Dr. Bapon Fakhruddin, Technical Director, Disaster Risk Reduction (DRR) and Climate Resilience, Tonkin&Taylor; Disaster Recovery Expert Pool, Asian Development Bank (ADB); Co-Chair, Disaster Loss DATA, Integrated Research on Disaster Risk (IRDR); Co-chair, FAIR DATA for DRR, CODATA; New Zealand Dr. Mathieu Denis, Acting CEO and Science Director, International Science Council, Paris, France
16:10	Session 4 Roundtable Discussion with the Participants What actions are needed to advance data policy in times of crisis? Guiding questions What is needed at the international level to improve data policy in times of crises (governance, ethics, and the engagement of individuals at every level trust, transparency, effectiveness, resilience)? What international tools/instruments do we currently have for developing data policy to respond to public health emergencies, natural disasters, and geopolitical crises? How can CODATA contribute to data policy development in times of crisis? What partnerships are required? Moderator Mr. Stéphane Jacobzone, Senior Adviser, Public Management and Budgeting, Public Governance, OECD; Organisation for Economic Co-operation and Development (OECD), Paris, France Panellists and meeting participants (in person and virtually) Francis P. Crawley, Chair, International Data Policy Committee, CODATA; Leuven, Belgium Professor Virginia Murray, Executive Committee Member, CODATA; Co-chair, Disaster Loss Data (DATA), Integrated Research in Disaster Risk (IRDR); Co-chair, Thematic Platform for Health EDRM Research Network, World Health Organization (WHO); and Head, Global Disaster Risk Reduction, UK Health Security Agency (UKHSA), United Kingdom Professor Barend Mons, Professor of BioSemantics at the Human Genetics Department of Leiden University Medical Center; Founder & Co-lead, GO FAIR; The Netherlands; President, CODATA Professor Paul Arthur Berkman, President, Science Diplomacy Center™; Associated Fellow, United Nations Institute for Training and Research (UNITAR); Faculty Association, Program on Negotiation and Harvard Law School, Falmouth, USA; Member, CODATA IDPC
16:50	Session 5 Summary of the workshop and next steps Professor B. Burcak Basbug Erkan, Department of Statistics, Middle East Technical University (METU); Academic Partnerships Director, Institute of Civil Protection and Emergency Management (ICPEM), United Kingdom Francis P. Crawley, Chair, International Data Policy Committee, CODATA; Leuven, Belgium
17:00	End of the Workshop

Background References

2015 UN Landmark Agreements

Sendai Framework for Disaster Risk Reduction and its Sendai Framework Monitor Sendai Framework Monitor Home page (undrr.org)
Sustainable Development Goals (SDGs) Home | Sustainable Development (un.org)
Paris Agreement The Paris Agreement | United Nations

Science and Data Principles

UNESCO Open Science | UNESCO
FAIR principles FAIR Principles – GO FAIR
OECD Data for Policy Data for policy – OECD
European Commission European Research Area Policy Agenda 2020-2024
CODATA’s The Beijing Declaration on Research Data, 2019
ISC & UNDRR Integrated Research on Disaster Risk (IRDR) Programme, 2021

All Hazards Approach

For all hazards approach that the Sendai Framework on Disaster Risk Reduction call for: ‘To strengthen technical and scientific capacity to capitalize on and consolidate existing knowledge and to develop and apply methodologies and models to assess disaster risks, vulnerabilities and exposure to all hazards (see paragraph 24 j)’

WHO Health Emergency and Disaster Risk Management:

WHO Implementing health emergency and disaster risk management landing page
WHO Health emergency and disaster risk management framework (2019) (available in English, Portuguese, Arabic, Chinese and Russian)
WHO technical guidance notes on Sendai framework reporting for ministries of health (2020) (available in English and Spanish)
WHO guidance on research methods for health emergency and disaster risk management (2021) and Supplement to be published in 2022)
WHO Health Emergency and Disaster Risk Management Research Network (launched 2018)
WHO GLOSSARY of Health Emergency and Disaster Risk Management Terminology (2020)