Six dilemmas for stakeholders inherently affecting data sharing during a zoonotic (re-)emerging infectious disease outbreak response

• Published in: BMC infectious diseases Vol. 24; no. 1; p. 185
• Main Authors: van Roode, Martine Y, Dos S Ribeiro, Carolina, Farag, Elmoubasher, Nour, Mohamed, Moustafa, Aya, Ahmed, Minahil, Haringhuizen, George, Koopmans, Marion P G, van de Burgwal, Linda H M
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 12-02-2024; BioMed Central; BMC
• Subjects: Analysis; Animals; Case studies; Collaboration; Communicable Diseases, Emerging - epidemiology; Communicable Diseases, Emerging - prevention & control; Context; Control; Cooperation; Data collection; Data sharing; Disease Outbreaks - prevention & control; Epidemics; Human-animal relationships; Humans; Infectious disease; Infectious diseases; Information Dissemination; Information sharing; Interviews; Middle East respiratory syndrome; One Health; Outbreak response; Outbreaks; Pathogens; Prevention; Public health; Qatar; Qualitative analysis; Qualitative research; Respiratory diseases; Risk factors; Root cause analysis; Stakeholders; Supranationalism; Zoonoses; Zoonoses - epidemiology; Qatar; Arabian Peninsula; Infectious disease; Data sharing; Outbreak response; One Health; Zoonoses
• ISSN: 1471-2334; 1471-2334
• DOI: 10.1186/s12879-024-09054-0

Timely access to outbreak related data, particularly in the early events of a spillover, is important to support evidence based control measures in response to outbreaks of zoonotic Emerging Infectious Diseases (EID). Yet, this is impeded by several barriers that need to be understood to promote timely sharing of data. Using the MERS epidemic as a model for a zoonotic EID outbreak, this study sought to provide an in-depth understanding of data sharing practices.
Semi-structured interviews with 25 experts were conducted, along with Focus Group Discussions with 15 additional experts. A root-cause analysis was performed to examine the causal relationships between barriers. Enablers were mapped to the root-cause analysis to understand their influence on the barriers. Finally, root causes were placed in context of core dilemmas identified from the qualitative analysis.
Eight barriers to data sharing were identified, related to collaboration, technical preparedness, regulations, and (conflict of) interests, and placed in the context of six dilemmas inherent to the multi-stakeholder collaboration required for a zoonotic outbreak response. Fourteen identified enablers showed the willingness of stakeholders to overcome or circumvent these barriers, but also indicated the inherent trial and error nature of implementing such enablers.
Addressing the barriers requires solutions that must consider the complexity and interconnectedness of the root causes underlying them, and should consider the distinct scopes and interests of the different stakeholders. Insights provided by this study can be used to encourage data sharing practices for future outbreaks FUNDING: Wellcome Trust and UK Aid; EU-H2020 Societal Challenges (grant agreement no. 643476), Nederlandse Organisatie voor Wetenschappelijk Onderzoek (VI.Veni.201S.044).