Data Sharing Principles: Consultation period Concluded
The Data Sharing Principles are the first step in the framework to be used in building a data sharing system. These principles have been developed to support the timely sharing of data by all stakeholders during a public health emergency (PHE).
GloPID-R invited stakeholders to read and provide comments on the document, and the final deadline for all responses was on May 26, 2017. If you would still like to provide your feedback, you can still do so by contacting Sophie Mathewson at phedata[at]wellcome.ac.uk.
GloPID-R Makes data sharing a top Priority
Data and knowledge sharing in public health emergencies helps support evidence-based decision making, and this increases the likelihood of an effective response and reduced morbidity and mortality. It also facilitates studies of new interventions, such as vaccines, for epidemic and pandemic threats.
GloPID-R established the Data Sharing Working Group in March 2016 under the leadership of Katherine Littler (Wellcome Trust) with the objective of developing a system for data sharing during public health emergencies (PHE) to support the research response.
Key Areas of the Action Plan:
- Defining the purpose (need), building on previous work on different data types by WHO and others
- Mapping the data environment for public health emergencies and non-public health emergencies
- Developing policy and framework for data sharing for PHE
- Implementing data sharing policy and practice
- Establishing a roadmap for collaboration
Removing Barriers to Data Sharing
Timely and transparent sharing of data in PHE remains challenging, mainly due to lack of incentives, the absence of appropriate infrastructure, and complex ethical and legal demands. The Data Sharing Working Group is laying the groundwork to make data sharing during PHE a future reality.
- Principles for Data Sharing
- Public Health Emergency Decision Tree (PHEDT)
- Case Studies to document data-sharing practices in past emergencies
Partnership & Coordination
This work is intended to support the WHO R&D Blueprint, a global mechanism to accelerate and coordinate research and development (R&D) for PHEs, which addresses both research preparedness and the research response during events.
The group’s goal is to ensure that the principles, tools and approaches that they develop are useful, relevant and valuable for the broader community involved in emergency response. They are interested in engaging with specific groups such as NGOs, epidemiologists, software developers, industry and scientists as their work develops.
Interested in working together? Contact the Data Sharing Working Group.
Data Sharing Working Group Members
- Chair: Katherine Littler, Wellcome Trust, UK
- Sophie Mathewson, Wellcome Trust, UK
- Wee-Ming Boon, National Health and Medical Research Council, Australia
- Alison Bourgon, Canadian Institutes of Health Research (CIHR), Canada
- David Carr, Wellcome Open Research, Wellcome Trust, UK
- Gail Carson, GloPID-R Secretariat
- Evelyn Depoortere, European Commission
- Jeannette Endres-Becker, German Federal Ministry for Education and Research (BMBF), Germany
- Matthew Garsia, Canadian Institutes of Health Research
- Gaetano Gugliemi, Ministry of Health, Italy
- Steven Kern, Bill & Melinda Gates Foundation, USA
- Gun Peggy Knudsen, Norwegian Institute of Public Health, Norway
- Kajsa-Stina Longuere, GloPID-R Secretariat
- France Mentre, Institut National de la Santé et de la Recherche Médicale (INSERM), France
- Daniel Mietchen, National Institutes of Health, USA
- Farah Al-Shorbaji, World Health Organization (WHO)
- Vasee Moorthy, World Health Organization (WHO)
- Jeffrey Mphahlele, South African Medical Research Council (SA MRC), South Africa
- Denise O’Connor, European Commission
- Carlos Segovia, Instituto de Salud Carlos III, Spain
- Seung-Hyeok Seok, National Research Foundation of Korea, Seoul National University, South Korea
Meetings and Presentations
- International Meeting on Emerging Diseases and Surveillance, Austria
- GloPID-R Zika Virus Research Workshop, Brazil
- Grand Challenges, England
- WHO Global Outbreak and Alert Response Network (GOARN) meeting, France
- International Data Week, USA
- Workshop with Zika Researchers, England
- Strengthening Data Sharing for Public Health: Final Strategic Round Table, England