Data Sharing

Working group objectives

  • to promote effective, ethical and equitable data sharing
  • to synthesis existing policies, guidance and good practice on data sharing by funders, journals and practitioners
  • to provide practical advice to researchers and data management teams on data sharing, including recommended language for broad consent for secondary use of data, recommendations for selecting repositories or platforms for data sharing, guidance on governance for data sharing and recommendations for developing data access agreements.

 

We encourage researchers who are seeking practical solutions to data sharing to contact us via WorkingGroups@covid19crc.org.

 

Working group members

Working Group Member

Ken Awuondo is a Biomedical Scientist with a background in Laboratory Sciences. He has a vast experience working in the field of Clinical Trials in Africa, supporting diagnostics. Besides regular work, Ken has supported Clinical Research projects under Short-Term Technical Assistance (STTA) programme for various organizations in Africa. Ken is currently working for The Global Health Network (TGHN), as the Africa Regional Manager.

Coalition working group:
Data Sharing
Working Group Member

Susan Bull, BSc, LLB, MA, PhD is the Senior Researcher in Ethics of Genomics and Global Health and a University Research Lecturer at the Ethox Centre and Wellcome Centre for Ethics and Humanities. Over the past eighteen years her work has focused on international health research ethics, particularly in LMICs. Specific research foci include ethical issues associated with sharing genomic and public health research data, seeking consent to research, controlled human infection studies, research in epidemics and emergencies, and ethical review of research.

Coalition working group:
Data Sharing
Chair of the Data Sharing Working Group
Member of the Ethics Working Group

Dr Cheah holds an Erasmus Mundus Masters in Bioethics and PhD in Pharmaceutics. She is an Associate 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.

Coalition working group:
Ethics
Data Sharing
Working Group Member

Greg was appointed Professor of Clinical Trials at Swansea University in December 2015 where he heads-up a UKCRC registered clinical trials unit. Prior to this appointment he was the Head of Statistics at the KEMRI/Wellcome Programne in Kilifi, Kenya which he joined in 2003 shortly after completing his PhD in Epidemiology at Tulane University, New Orleans. He also holds an MSc in Information Systems Engineering from Southbank Polytechnic (now University), London. Prior to his PhD he was the Head of Computing and Statistics at MRC Labs, The Gambia. He has interests in clinical trials, infectious diseases, malnutrition, capacity building for LMIC scientists and information systems.

Coalition working group:
Data Sharing
Steering Committee Member
Working Group Member

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.

Working Group Member

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).

Coalition working group:
Data Sharing
Working Group Member

Oommen John is specialized in Internal Medicine and Health Information Systems. He leads a programme of research at George Institute India implementing health systems strengthening interventions and is involved in multi-centric clinical trials. He is the secretary of the Asia Pacific Association for Medical Informatics, serves on the International Advisory Board of the Commonwealth Centre for Digital Health and Foundation for Innovative Diagnostics, Geneva. He has worked with WHO implementing vaccine trials and strengthening immunization systems.

Coalition working group:
Data Sharing
Data Management
Working Group Member

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.

Coalition working group:
Data Sharing
Working Group Member

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.

Coalition working group:
Data Sharing
Working Group Member

Laura is Associate Director of the Infectious Diseases Data Observatory (IDDO). IDDO is a scientific coalition, working across the health, research and humanitarian communities to reduce the impact of poverty-related diseases through responsible data reuse. Based at the University of Oxford, Laura develops platforms which synthesise health data to generate new evidence and research-driven responses to poverty-related diseases and emerging infections. Laura’s research interests include exploring issues in sharing biomedical research data and in changing the paradigm of clinical research in outbreaks to enable rapid research response. Her leadership of the Ebola Data Platform and the ISARIC COVID Data Platform has established new standards for best practice in access to data in public health emergencies. As a member of the Clinical Data Interchange Standards Consortium (CDISC) Blue Ribbon Commission and Real-World Data Advisory Group, Laura contributes to the strategic direction of data standards development and implementation in academic research. Before joining IDDO, Laura was based in Vietnam as the Head of Clinical Trials for the Oxford University Clinical Research Unit.

Coalition working group:
Data Sharing
Working Group Coordinator

Mutinda Brian is a clinical data manager who works with Mahidol Oxford Research Unit (MORU) based in Bangkok, Thailand where he is responsible for providing full-cycle data management support to researchers in health research. After spending nearly a decade in the field of clinical research, Brian has vast experience in electronic data capture tools and providing solutions in limited resource settings. Brian has a background in computer technology and has interests in providing innovative solutions in research data management and sharing. He started his career in clinical data management at KEMRI-Wellcome Trust in 2011 where he worked in Phase II and III Malaria clinical trials. In 2012 he joined Drugs for Neglected Diseases initiative (DNDi) where he works in data management for Visceral leishmaniasis (VL) and Pediatric HIV studies.

Coalition working group:
Data Sharing
Working Group Member

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.

Coalition working group:
Data Sharing
Steering Committee Member
Working Group Member

Francine Ntoumi est une bologiste moléculaire de nationalité congolaise (République du Congo). Elle est la fondatrice, présidente et directrice exécutive de la Fondation Congolaise pour la Recherche médicale, en République du Congo, Enseignant-chercheur en Immunologie à l’Université Marien Ngouabi et Professeure Associée et Chef d’un groupe de recherche à l’Institut de Médecine Tropicale de l’Université de Tübingen, en Allemagne. Elle est membre de plusieurs comités scientifiques et réseaux scientifiques internationaux en Afrique et en Europe, et apporte son expertise aussi à l’Union Africaine en tant que membre du panel de Haut niveau sur les technologies émergentes. Son domaine de recherche principal est le paludisme, et tout au long de sa carrière elle a formé des scientifiques africains de différentes nationalités dans des disciplines telles que l’immunologie et l’épidémiologie moléculaire. Depuis janvier 2009, le Professeur Ntoumi est impliquée dans le renforcement des capacités de la recherche biomédicale en Afrique centrale par le biais du Réseau régional d’Afrique centrale sur les essais cliniques (Central Africa Network on Clinical Research, CANTAM) et du réseau panafricain PANDORA-ID-Net. En 2012, elle a reçu le Prix Scientifique Kwame Nkrumah de l’Union africaine pour les femmes, et lauréate du Prix RICE (Réseau International des Congolais de l’extérieur). Elle a reçu le Prix Georg Forster en Allemagne, et le Prix Christophe Mérieux en France, en 2015 et 2016 respectivement. En 2016, elle reçoit la médaille d’or de la recherche scientifique du chef de l’Etat de la république du Congo.

Coalition working group:
Data Sharing
Working Group Member

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.

Coalition working group:
Data Sharing
Working Group Member

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.

Coalition working group:
Data Sharing
Working Group Member
Coalition working group:
Data Sharing

Strengthening health data access for health systems resilience and evidence-informed policy for COVID-19 response (SHARE)

The Data Sharing Working Group is tackling some of the common barriers to data sharing and re-use, with a focus on the needs of researchers in low- and middle-income countries.

The World Health Organization has funded several projects led by working group members that examine common barriers, including:

  • the information needs of ethics review committees
  • the data sharing training needs of researchers
  • adherence to data sharing commitments following publication of COVID-19 drug and vaccine trial results
  • the harmonization of data sharing requirements

 

The projects will deliver a series of reports, recommendations, guidance, and a workshop by the end of the year.

Learn more about the workshop, to be held on 2 December 2020, here.

See a table summarizing all SHARE projects here.

Working Group Publications

If you are a researcher who would like to submit a query to the “Data Sharing” working group, please email WorkingGroups@covid19crc.org with “Data Sharing” in your subject heading.

Other working groups