Timely and clear communication of disaster research is necessary to advance knowledge about the needs of disaster affected populations, helping improve the response and recovery.To facilitate translation of research findings into action, prompt dissemination of results across multiple forms of communication is recommended.1 When communicating to the public, lay language should be used to ensure comprehensibility.1,2
There is also an ethical imperative to publish and share data. For the past three decades, leaders of the scientific community have urged researchers to share access to scientific data in order to allow scholars to reproduce or verify research findings; make the results of publicly funded research available to the public; enable others to ask new questions using existing data; and build on past data to advance research.3
Sharing and publishing data is particularly important during disasters and public health emergencies, where data has the potential to have a profound impact on response capabilities.4 While the culture of publishing data has been slower to diffuse across human subjects research due to concerns surrounding personal identifiable information, there are safe ways to share this data that can benefit other researchers and practitioners. Storing and sharing protected data must comply with the procedures approved by one’s IRB. Before publishing, this data should be de-identified so that no information can be traced back to study participants.
DesignSafe: A Platform for Publishing and Sharing Natural Hazards Data
DesignSafe is the web-based cyberinfrastructure platform for the National Science Foundation’s Natural Hazards Engineering Research Infrastructure network. Headquartered at the University of Texas-Austin, DesignSafe provides a secure data repository and the computational tools needed to manage, analyze, and publish critical data for natural hazards research. In 2020, a new social science and interdisciplinary data model was developed by the CONVERGE and RAPID teams in partnership with DesignSafe to enable the publication of data, data collection instruments, and research protocols. This platform can be used to share and publish disaster-related data so that it can be accessed by other scholars doing similar research.
1.Packenham JP, Rosselli RT, Ramsey SK, et al. Conducting science in disasters: Recommendations from the NIEHS Working Group for Special IRB Considerations in the Review of Disaster Related Research. Environmental Health Perspectives. 2017;125(9). doi:10.1289/EHP2378
2.Fernandez CV, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. IRB. 2003;25(3).
3.Ruggles S, Adolph K, Chen R, Entwisle B, Gornick J, Gutmann M. Public Access to NSF-Funded Research Data for the Social, Behavioral, and Economic Sciences Workshop Report.; 2016. http://www.nsf.gov/sbe/SBE_DataMgmtPlanPolicy.pdf
4.Langat P, Pisartchik D, Silva D, et al. Is there a duty to share? Ethics of sharing research data in the context of public health emergencies. Public Health Ethics. 2011;4(1):4-11. doi:10.1093/phe/phr005