Sharing of research data and findings should be the norm in public health emergencies
Opting in to data sharing should be the default practice during public health emergencies, such as the recent Ebola epidemic, and barriers to sharing data and findings should be removed to ensure those responding to the emergency have the best available evidence at hand according to Vasee Moorthy and colleagues from the World Health Organization (WHO) in a Policy Forum article published in PLOS Medicine.
In their article the authors outline the findings of a recent WHO-organized consultation that was attended by leading representatives from the scientific community, biomedical journals, industry, funding organizations, and government ministries. Meeting participants collectively identified several key obstacles to sharing research data and findings in times of acute public health need. These included the misperception that disclosure of major findings may negatively prejudice subsequent journal publication; limitations in technical capacity to share information; concerns that data would be analysed and published without due recognition; and the possibility that data sharing could lead to the development of products that source populations are unable to afford.
During the meeting representatives from leading biomedical journals responded with an unequivocal assertion that public disclosure of information of relevance to public health emergencies should not prejudice journal publication of full scientific reports. Meeting participants also recognized that it is not enough for parties to simply agree, in principle, on sharing primary data, as the world must also commit to tackling the technical challenges of implementing data sharing agreements by simplifying and standardizing data capture procedures, assuring data quality, and harmonizing disparate data platforms. How best to effect a shift away from the culture of data ownership toward one of data stewardship remains paramount among broader issues to be addressed.
The authors conclude, "[a]s the quick and transparent dissemination of information is the bedrock of good science and public health practice, it is important that the current trends in data sharing carry over to all matters of acute public health need. Such a global norm would advance the spirit of open collaboration, simplify current mechanisms of information sharing, and potentially save many lives in subsequent outbreaks."
In an accompanying Perspective article Patrick Vallance and colleagues from GlaxoSmithKline note, "[w]e are perpetually in the midst of several health care crises, including those of neglected tropical diseases and other chronic diseases, for which data sharing has the potential to lead to faster and better solutions. As a matter of principle, we should be willing to share data without regards to which disease is being studied."