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Science, technology and innovation policy

Enhancing access to research data during crises: lessons learned from the COVID-19 pandemic

 

  

 23 April 2021  Virtual workshop

 

Overview

The aim of this workshop is to explore some of the lessons learned from the COVID-19 pandemic with regards to making data FAIR and open what this might mean for future policy. What have been the main challenges and what initiatives have been taken - nationally and internationally - to address these challenges?

RDA has developed more practical guidelines on managing different types of COVID-relevant data (June 2020) and OECD released a revised recommendation on enhancing access to research data in January, 2021. How do these align with data policy initiatives that countries are taking in response to COVID-19 and what are the longer term implications for research data.

This event workshop, includes case study presentations from different fields of research as well as moderated panel discussion with representatives of research agencies, funders and international organisations.

Access the workshop summary (PDF)

 

 

agenda AND BACKGROUND DOCUMENT

Workshop was held on 23 April, 2021, via Zoom, 12:30-16:00 CET (Paris time), [10.30-14:00 UTC]. The workshop was jointly organised with the Research Data Alliance (RDA) and has been recognised as co-located event with the RDA Plenary 17.

  

DETAILED AGENDA

12.30-12.40 - Introduction

Carthage Smith OECD Global Science Forum – OECD work on research data access

Natalie Harrower, Director, Digital Repository of Ireland, Royal Irish Academy –

RDA Recommendations and Guidelines for data sharing and COVID-19.

Read the presentation (PDF)

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12.40-13.20 - Session 1: Basic medical and clinical research

What are the main challenges for access to research data in these fields in relation to COVID-19? How are these challenges being addressed? What is needed to be better prepared for future crises? What are the implications for science policy (taking note of the 2021 OECD recommendation and RDA work)?

3 case presentations: 1) Nevine Zariffa, Scientific Project Lead, International COVID-19 Data Alliance (ICODA), UK: ICODAharnessing the power of health data. 2) Michael Brudno, Chief data scientist, University Health Network, Canada. 3) Marie Paule Kieny, Director of Research, INSERM, France: COVID-19 vaccine trials in France and the move to open science

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13.20-14:00 - Session 2: Omics research and epidemiology

What are the main challenges for access to research data in this field in relation to COVID-19? How are these challenges being addressed? What is needed to be better prepared for future crises? What are the implications for science policy (taking note of the 2021 OECD recommendation and RDA work)?

3 case presentations: 1) Niklas Blomberg, Director, ElIXIR, Europe 2) Priyanka Pillai, Public Health, University of Melbourne, Australia 3) Xihong Lin, Biostatistics, Harvard University and MIT, USA

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14:10-14:50 - Session 3 Social sciences and interdisciplinary research

What are the main challenges for access to research data in this field in relation to COVID-19? How are these challenges being addressed? What is needed to be better prepared for future crises? What are the implications for science policy (taking note of the 2021 OECD recommendation and RDA work)?

3 case presentations: 1) Stefania Milan, Department of Media Studies, University of Amsterdam, Netherlands 2) Katja Mayer, Science and Technology Studies, University of Vienna, Austria: Engaging with pandemic knowledge: open social science and policy 3) Yukio Ohsawa, School of Engineering, University of Tokyo, Japan: "Stay with Your Community" - reducing the risk of the infection of COVID-19

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14:50-15:50 - Session 4: Roundtable discussion: National and international policy perspectives

This session will focus on the role of science ministries and research and funding agencies: What enabling actions are being taken to promote data access in response to COVID-19, e.g. strategies, specific policies, infrastructure investment, funding? How can the synergies between national and international efforts by maximised?

8 short oral interventions: 1) Camilla Stoltenberg, Director General, Institute of Public Health, Norway. 2) Kazuhiro Hayashi, Research Unit for Data Appication, NISTEP. Japan 3) Yazdan Yazdanpanah, Director of ANRS Maladies Infectieuses Emergentes, France. 4) Claudia Bauzer Medeiros , Institute of Computing, Univerity of Campinas and FAPESP, Brazil. 5) Michal Kahn, Centre for Research on Evaluation, Science and Technology, Stellenbosch University, South Africa. 6) Dr. Kiwon Jang, Korea Bioinformation Center / Korea Research Institute of Bioscience and Biotechnology. 7) Steven Kern, Gates Foundation. 8) Konstantinos Repanas, Open Science Unit, European Commission.

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Background information

  • Data access and re-use is critical for ensuring the efficiency and effectiveness of the global scientific research effort to address the COVID-19 pandemic. Access to trusted, well described data, together with the software, models and workflows that are necessary for the production and analysis of this data, is necessary across the many different domains of science that are being mobilised to understand and combat COVID-19. Open and timely access to research data and models underpins the science advice that is informing public health strategies. Such data and analytical tools have been critical to the rapid development and testing of vaccines and therapeutics. They are also essential for designing, monitoring and assessing the impact of the socio-economic policies that are being implemented in response to the pandemic.

  • The availability of information and communication technology has improved the global capacity to implement systems to share data during a pandemic. However, the lack of harmonisation across diverse systems is currently a major obstacle to timely and effective access. Inititives already underway in Europe and other regions to develop Open Science Clouds are not yet well enough developed to overcome this obstacle. In short, a lot of data that are extemely valuable for COVID-19 research and responding to the pandemic are not sufficiently, findable, accessible, interoperable and reusable (FAIR).

  • The unprecedented spread of the virus has prompted a rapid and massive research response. However, there are no universally adopted systems or standards, for collecting, documenting and disseminating COVID-19 research data and associated code and software. Many data are not reusable by, or useful to, different communities if they have not been sufficiently documented and contextualised, or appropriately licensed. This is not a new challenge for many areas of science but, in the context of COVID-19, it is a challenge that needs to be urgently addressed and for which, in many cases, solutions exist but have not been fully adopted.

  • The responsible, FAIR and timely sharing of data is an essential element of the Open Science approach that the world needs to effectively combat pandemics like COVID-19 and other complex crises. Limiting or delaying access not only slows up scientific progress but, as we are seeing in several countries, it can also undermine public trust in science and science-based decision-making. At the same time, much of the data related to the pandemic is personal or sensitive, and it is critically important to protect privacy and ensure the ethical management and use of this resource. Policymakers, research funders, and research institutions around the world must work together, to mandate, incentivise and support actions to harmonise and streamline the responsible and timely provision and exchange of data locally, nationally and internationally.

 

 

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