The use and sharing of data are essential in public health and even more so during health emergencies. However, several obstacles limit data sharing, and the absence of a standardized mechanism and best practice framework for global data sharing during public health emergencies further complicates the situation. The revised International Health Regulations (2005) dictates international management of public health emergencies of international concern but does not establish rules or mechanisms for data sharing therein. Recent public health emergencies have unveiled flaws in data sharing, highlighting an urgent need for the design and adoption of an effective and cohesive global guidance framework. In the absence of such a framework, several global health stakeholders and organizations have developed principles and published policies and guidelines for facilitating data sharing in public health emergencies.
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What is a public health emergency?
According to the World Health Organization (WHO), public health emergencies can arise from a wide range of causes, including outbreaks of contagious, life-threatening diseases, and natural disasters, as well as chemical contamination of the environment and the release of radiation.1
Why is data sharing important during public health emergencies?
In today’s highly interconnected world, responding to public health emergencies demands strong global cooperation. Rapid data sharing is critical during an unfolding public health emergency,2 in particular among actors directly involved in the emergency response, such as researchers, public health agencies, international organizations, front-line health professionals, public health practitioners, and the humanitarian sector.
What type of data needs to be shared during a public health emergency?
Such data include, for example, surveillance data, trial data, pathogen genome data, case reports, and summary results derived from these data sources.3
What are some of the challenges in data sharing during recent public health emergencies?
The response to the 2013-2016 Ebola epidemic in West Africa highlighted the “power of data generated and analyzed by the responder and academic communities to help shape and improve the public health response in international health emergencies,”4. However, it also showcased flaws in data sharing, with “several examples of individuals and organizations being unwilling to share data in real time, including data that was vital for public health planning in this difficult, fast-moving emergency”.4
The main reasons for not sharing data were: 1) perceived disincentives (e.g., risks of jeopardizing subsequent publication, allowing pre-emptive use of data by others for their own publications, and breaching confidentiality agreements); 2) the lack of a mechanism to enable data sharing; and 3) the absence of positive incentives for doing so.4
Similarly, during the 2016 Zika virus outbreak in South America, the lack of established standards for secondary data analysis sparked disagreements within the scientific community. For example, Brazilian researchers who shared genome sequences of Zika virus in a public database felt they were not appropriately credited in subsequent publications.5
Other issues such as technical, motivational, economic, political, legal, and ethical barriers have further limited data sharing during public health emergencies.6
Data sharing during the COVID-19 pandemic
Since the beginning of the COVID-19 pandemic, the world has seen significant improvements in data sharing, relative to previous public health emergencies.
For instance, the rapid availability of the genomic sequencing of SARS-Cov-2 — publicly shared by China in early January 20207 — enabled scientific efforts for pandemic response, including the development of diagnostic tools and vaccines with unprecedented speed.
Moreover, key players in global health have come together, and many initiatives have been launched to generate, curate, and share data to drive policies, decision-making and scientific progress, such as Solidarity clinical trial for COVID-19 treatments,8 Solidarity II global serologic study for COVID-19,9 International COVID-19 Data Alliance (ICODA),10 and the Johns Hopkins Coronavirus Resource Center.11
To date, there is no standardized best practice framework and no widely available mechanisms for data sharing during public health emergencies.4
Although the International Health Regulations (2005) (IHR)12 streamlines the exchange of information between WHO and member states, and encourages cooperation for a rapid exchange of public health information, it does not establish rules or mechanisms for data sharing during public health emergencies.
Given the importance of data sharing in public health emergencies and the obstacles encountered during past outbreaks, it is clear that the “design and adoption of a consensus-built global governance agreement for rapid, effective, collaborative investigation in the event of emerging infectious disease threats with pandemic potential”13 is much needed and long overdue.
Some researchers propose to amend the existing IHR, to include clear codes of practice for sharing public health data and add clear international standards on data management, sharing, and ownership.13
In the absence of an effective and cohesive global framework for data sharing, several international stakeholders and organizations have developed principles and published policies and guidelines for facilitating data sharing in public health emergencies.
However, these initiatives are part of a fragmented and unsystematic data-sharing environment that does not meet the critical need for rapid and efficient sharing of data during public health emergencies. Instead, an overarching, cohesive, and effective global strategy on health data sharing should be envisaged to simplify and regulate data sharing processes among global health stakeholders.
Ideally, a global strategy on health data should comprise, at a minimum: 1) clear governance rules, including data standards, management, sharing, and ownership (e.g., provisions to ensure privacy, confidentiality, and reciprocity among data contributors); and 2) mechanisms for facilitating ethical, equitable, timely, and effective data sharing, primarily through a centralized collaborative database gathering high-quality data that is publicly available, usable, and shareable.
Principles to guide the development of a framework for timely and efficient data sharing during public health emergencies
- Global Research Collaboration for infectious disease preparedness. “Principles of Data Sharing in Public Health Emergencies,” June 2018. https://www.glopid-r.org//opt/vhosts/iepi.mcmaster.ca/www/web/app/uploads/2018/06/glopid-r-principles-of-data-sharing-in-public-health-emergencies.pdf.
Recommendations to enhance data sharing during public health emergencies
- Global Research Collaboration for infectious disease preparedness. “GLOPID-R Roadmap for Data Sharing in Public Health Emergencies,” 2019. https://www.glopid-r.org//opt/vhosts/iepi.mcmaster.ca/www/web/app/uploads/2019/06/glopid-r-roadmap-for-data-sharing.pdf.
- Modjarrad, Kayvon, Vasee S. Moorthy, Piers Millett, Pierre-Stéphane Gsell, Cathy Roth, Marie-Paule Kieny, VS Moorthy, et al. “Developing Global Norms for Sharing Data and Results during Public Health Emergencies.” PLOS Medicine 13, no. 1 (January 2016): e1001935. https://doi.org/10.1371/journal.pmed.1001935.
- World Health Organization. “WHO’s Code of Conduct for Open and Timely Sharing of Pathogen Genetic Sequence Data during Outbreaks of Infectious Disease,” 2019. https://www.who.int/blueprint/what/norms-standards/GSDDraftCodeConduct_forpublicconsultation-v1.pdf?ua=1.
Ethical issues regarding the collection, storage, and sharing of data and samples in public health emergencies
- Nuffield Council on Bioethics. “Research in Global Health Emergencies: Ethical Issues,” Chapter 9 – Data and Samples. January 2020. https://www.nuffieldbioethics.org/assets/pdfs/RGHE_full_report1.pdf.
1. World Health Organization. Advancing the Right to Health: The Vital Role of Law. World Health Organization, 2016. https://apps.who.int/iris/handle/10665/252815.
2. Dye, Christopher, Kidist Bartolomeos, Vasee Moorthy, and Marie Paule Kieny. “Data Sharing in Public Health Emergencies: A Call to Researchers.” Bulletin of the World Health Organization 94, no. 3 (March 2016): 158. https://doi.org/10.2471/BLT.16.170860.
3. Centre for Evidence-Based Medicine. “WHO Consultation on Data and Results Sharing During Public Health Emergencies: Background Briefing.” University of Oxford, September 2015. https://www.who.int/medicines/ebola-treatment/background_briefing_on_data_results_sharing_during_phes.pdf?ua=1.
4. Whitty, Christopher J. M., Trevor Mundel, Jeremy Farrar, David L. Heymann, Sally C. Davies, and Mark J. Walport. “Providing Incentives to Share Data Early in Health Emergencies: The Role of Journal Editors.” The Lancet 386, no. 10006 (November 7, 2015): 1797–98. https://doi.org/10.1016/S0140-6736(15)00758-8.
5. Jean-Paul Chretien et al., “Make Data Sharing Routine to Prepare for Public Health Emergencies,” PLOS Medicine 13, no. 8 (August 2016): e1002109, https://doi.org/10.1371/journal.pmed.1002109.
6. Panhuis, Willem G. van, Proma Paul, Claudia Emerson, John Grefenstette, Richard Wilder, Abraham J. Herbst, David Heymann, and Donald S. Burke. “A Systematic Review of Barriers to Data Sharing in Public Health.” BMC Public Health 14 (2014): 1144. https://doi.org/10.1186/1471-2458-14-1144.
7. Cohen, Jon. “Chinese Researchers Reveal Draft Genome of Virus Implicated in Wuhan Pneumonia Outbreak,” January 11, 2020. https://www.science.org/content/article/chinese-researchers-reveal-draft-genome-virus-implicated-wuhan-pneumonia-outbreak.
8. World Health Organization. “‘Solidarity Clinical Trial for COVID-19 Treatments.” Accessed November 22, 2021. https://www.who.int/emergencies/diseases/novel-coronavirus-2019/global-research-on-novel-coronavirus-2019-ncov/solidarity-clinical-trial-for-covid-19-treatments.
9. World Health Organization. “‘Solidarity 2 Global Serologic Study for COVID-19.” Accessed November 22, 2021. https://www.who.int/emergencies/diseases/novel-coronavirus-2019/global-research-on-novel-coronavirus-2019-ncov/solidarity-2-global-serologic-study-for-covid-19.
10. International COVID-19 Data Alliance. “Home.” ICODA – A globally coordinated, health data-led research response to tackle the COVID-19 pandemic. Accessed November 22, 2021. https://icoda-research.org/.
11. Johns Hopkins University. “COVID-19 Map.” Johns Hopkins Coronavirus Resource Center. Accessed November 22, 2021. https://coronavirus.jhu.edu/map.html.
12. International Health Regulations.” World Health Organization, 2005. http://www.who.int/ihr/publications/9789241596664/en/.
13. McNabb, Scott J. N., Affan T. Shaikh, Jennifer B. Nuzzo, Alimuddin I. Zumla, and David L. Heymann. “Triumphs, Trials, and Tribulations of the Global Response to MERS Coronavirus.” The Lancet Respiratory Medicine 2, no. 6 (June 1, 2014): 436–37. https://doi.org/10.1016/S2213-2600(14)70102-X.
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