Data Management & Data Sharing
- To advocate and support good data management and sharing practices in health research.
- To promote ethical, equitable and efficient sharing and reuse of health-related data, including in artificial intelligence
NOTE: The working group is now seeking members who are keen to contribute actively in the group and wider discussions within the CERCLE Coalition. Members should be able to commit to attending meetings and participate actively in discussions. Join Now
Workshop
What are the existing gaps in knowledge and skills among researchers in low- and middle-income countries, to effectively share and use COVID-19 research data? Watch the workshop recording:
Publication
Written by working group members linked to or informed by coalition efforts.
- FAIR, ethical, and coordinated data sharing for COVID-19 response: a scoping review and cross-sectional survey of COVID-19 data sharing platforms and registries The Lancet Digital Health 2023
By Maxwell L, Shreedhar P, Dauga D, McQuilton P, Terry RF, Denisiuk A, Molnar-Gabor F, Saxena A, Sansone SA.
Webinar
Effective, equitable, and efficient sharing of individual level data: Recommendations, solutions, and ways forward
Video interview
Working group members
Prof. Cheah holds an Erasmus Mundus Masters in Bioethics and PhD in Pharmaceutics. She is a Professor at Oxford University and head of Bioethics & Engagement at the Bangkok based Mahidol Oxford Tropical Medicine Research Unit. Her research focuses on the ethics of research in low- and middle-income settings, data sharing, and the intersection between ethics and community engagement. She is a member of the Steering Committee of Global Forum for Bioethics in Research. She is currently leading an international survey and qualitative study on the social and ethical aspects of public measures in COVID-19.
MBBS, University of Sri Jayawardenapura, Sri Lanka (2001) MSc in Biomedical Informatics, University of Colombo, Sri Lanka (2011) MD in Health Informatics, University of Colombo, Sri Lanka (2019)
Professor Philippe Guérin is Director of the Infectious Diseases Data Observatory (IDDO). He was appointed Director of the WorldWide Antimalarial Research Network (WWARN) – the prototypic model for IDDO – in January 2009. Philippe has extensive experience working in the field for Médecins Sans Frontières and as a researcher for a Wellcome Trust Research Unit in many countries in Africa and Asia. Following three years as a Senior Advisor to the Department of Infectious Disease Epidemiology at the Norwegian Institute of Public Health, Philippe joined Épicentre in Paris – a World Health Organization (WHO) Collaborating Centre for Research in epidemiology and response to emerging diseases. Philippe served as Scientific Director for six years at Épicentre before moving to WWARN.
Dr Calvin Ho is Associate Professor with the Faculty of Law, University of Hong Kong. His research is primarily on the governance of health and biomedical technologies, and more generally on medical law and ethics, as well as the normative aspects of health systems (especially on insurance and access) and global health. He is currently an Ethics Board member of Médecins Sans Frontières (Doctors Without Borders), and was Co-Head of the World Health Organization Collaborating Centre for Bioethics in Singapore (2014-2019).
Sharon is a Senior Lecturer at the Faculty of Law, University of Malaya (Kuala Lumpur, Malaysia) where she teaches medical law and medical ethics to undergraduate as well as postgraduate students. She also teaches on the Masters of Health Research Ethics (MOHRE) programme at the Faculty of Medicine, University of Malaya. She is currently working on a number of projects involving global health research ethics, particularly in relation to migrant and refugee populations.
Lauren Maxwell, PhD, MPH is a Senior Researcher at Heidelberg University’s Institute for Global Health and manages the Zika Virus Individual Participant Data Consortium on behalf of the WHO Department of Sexual and Reproductive Health and Research. Lauren’s work focuses on retrospective harmonization, the research response to epidemics, barriers and facilitators to data sharing, violence against women and children, and women and girls’ sexual and reproductive health. Lauren received her PhD in epidemiology from McGill University and her Master’s in Maternal and Child Health from UNC’s Gillings Global School of Public Health.
Dr Duduzile Ndwandwe is a Senior Scientist at Cochrane South Africa and works on the Clinical Trials Registry portfolio of Cochrane South Africa. Our work involves the management of the Pan African Clinical Trials Database (PACTR) and South African Clinical Trials Registry (SANCTR). We also involved in vaccine implementation research within our Unit. Dr Ndwandwe has a PhD in Molecular Mycobacteriology from University of the Witwatersrand and completing an international Master in Vaccinology with University of Lausanne. She has worked in the implementation of various HIV prevention clinical trials in South Africa and currently engages with key stakeholders National and regionally in efforts to promote transparency of evidence generated in the conduct of clinical trials.
Dr. Sauman Singh is the Secretariat Director at CERCLE, with a strong background in public health and global health policy.
Before joining CERCLE, Sauman worked as a Senior Scientific Coordinator at the Infectious Diseases Data Observatory (IDDO) at the University of Oxford, leading a multistakeholder research project in India. He has also contributed to the Drugs for Neglected Diseases initiative (DNDi) and the World Health Organization (WHO), where he helped support research and policy efforts in global health.
Sauman holds a PhD in Economics from the Aix-Marseille School of Economics, where he researched Indian pharmaceutical firms’ market strategies in Africa. He also holds a Master’s in Public Health (MPH) from EHESP, Paris, and a Master’s in Economic Policy and Innovation from Sorbonne Paris Cité.
Robert Terry is a senior project manager with more than 25 years experience in strategy development and implementation. He has specialized knowledge in natural resources, development, health and research policy in low and high income countries for governmental, non-governmental, philanthropic and UN organizations. Robert joined the World Health Organization in 2007 and led on the development and implementation of the Organization’s strategy on Research for Health. He is one of the lead authors of the 2013 WHO World Health Report– Research for Universal Health Coverage and developed the concept which led to the creation of the WHO Global Health R&D Observatory. Currently he works for the World Health Organization’s Special Programme for Research and Training in Tropical Diseases (TDR) where he is responsible for knowledge management, open access, data sharing and ensuring evidence is translated into policy and practice. His early career in research and development was in agriculture and he went on to positions at the Royal Society where he ran the international research exchange programme and the Wellcome Trust, where he was senior policy advisor. He led the development of Wellcome’s first open access policy and the subsequent establishment of Europe PubMed Central.
Naomi Waithira heads-up Data Management at Mahidol Oxford Research Unit (MORU) in Bangkok where she is responsible for data management of clinical research studies in the institution. Nested within the Clinical Trials Support Group, her team develops software applications and databases, curates data and provides training to study staff in Asia and Africa. With a background in Computer Science, Naomi worked in software and database development since 2006. Her interest is to increase utility of data and software applications through: use of easy-to-access technology such as smartphones for data collection, automation of data curation processes and integration of information systems. Naomi works closely with collaborators to promote data sharing and apply the FAIR (Findable, Accessible, Interoperable and Reusable) principles in health data.
If you would like to submit a query to the Data Management & Data Sharing working group, please send us an email.