Progress In Promoting Data Sharing In Public Health Emergencies

In February 2016, the World Health Organization (WHO) declared the Zika virus-related cluster of microcephaly cases and other neurological disorders reported in Brazil, a Public Health Emergency of International Concern (PHEIC). (1) Following the declaration, over 30 global health bodies issued a joint statement committing to data sharing to ensure that the global response to the Zika virus and future emergencies, could be informed by the best and most current evidence. (2) The statement represented a concerted effort by those involved to address past failures of timely access to relevant data. It also highlighted the lack of a clear path to implementation for data sharing during public health emergencies. In March 2016, the Global Research Collaboration for Infectious Disease Preparedness (GloPID-R) established a data-sharing working group which has been working in coalition with other stakeholders including WHO, scientists, nongovernmental organizations, journals and other agencies. (3) This group is working to identify barriers to data sharing in public health emergencies that should be addressed to better prepare for any future epidemic. We review the progress since the joint statement was made, outline the key challenges related to data sharing and summarize the groups activities to date. The experiences from the 2013-2016 Ebola virus disease outbreak and the 2015 Zika virus outbreak demonstrated the importance of research in public health emergencies and the difficulties associated with sharing research findings rapidly and outside of conventional scientific publications. (4-7) Research--whether epidemiological, genetic, preclinical, microbiological, behavioural or operational--can generate new knowledge about an outbreak in rapidly changing situations. Research can inform risk communication, surveillance, clinical care, product development and other interventions. The WHO consensus and policy statements called for a paradigm shift in information sharing in public health emergencies and described the particularities to consider in dealing with different data types. (8,9) Despite these efforts, rapid data sharing during public health emergencies remains challenging for various reasons. First, there are limited incentives for researchers and other people responding to the emergency to share data. Second, there is a lack of appropriate infrastructure for data sharing such as repositories and information technology platforms. Such rapid data sharing requires a clear governance structure that ensures a balance between privacy and access, as well as adheres to national and international ethical and legal requirements. Implementation of calls for data sharing is hampered by barriers, including: (i) inequity in capacity and funding between researchers in high-and low-income settings; (ii) varying concepts of data ownership by data providers and data users; (iii) no clear mechanism for attribution and academic recognition for data providers and data users related to published products; (iv) costs and varying degrees of access to data management systems within research groups or institutions; (v) reputational risk from premature sharing of data and results; (vi) ethical and regulatory issues related to privacy and consent in the context of experimental treatment and clinical care; (vii) access to the benefits of research; (viii) concerns about loss of potential financial benefits from eventual commercialization and intellectual property rights. …