PLoS Medicine
http://www.plosmedicine.org/
(Accessed 9 January 2016)

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Data Sharing as Part of the Normal Scientific Process: A View from the Pharmaceutical Industry
Patrick Vallance, Andrew Freeman, Murray Stewart
Perspective | published 05 Jan 2016 | PLOS Medicine
10.1371/journal.pmed.1001936

In this week’s PLOS Medicine, Modjarrad and colleagues report the outcome of a World Health Organisation (WHO) consultation on developing global norms for sharing data and results during public health emergencies, with a focus on clinical, epidemiologic, and genetic features of emerging infectious diseases as well as experimental diagnostics, therapeutics, and vaccines [1]. There can be little doubt that the need to find effective health care solutions as quickly as possible to prevent or stop the spread of infectious disease in an emergency makes rapid data sharing the right thing to do for patients and society. Many of the barriers to data sharing in public health emergencies identified in the paper by Modjarrad et al. have been highlighted as areas for change to enable data sharing more generally [2,3]. We 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. So, which data and when?…

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Developing Global Norms for Sharing Data and Results during Public Health Emergencies
Kayvon Modjarrad, Vasee S. Moorthy, Piers Millett, Pierre-Stéphane Gsell, Cathy Roth, Marie-Paule Kieny
Policy Forum | published 05 Jan 2016 | PLOS Medicine
10.1371/journal.pmed.1001935
Summary Points
:: Leading stakeholders from around the world convened at a WHO consultation in September 2015, where they affirmed that timely and transparent sharing of data and results during public health emergencies must become the global norm.
:: Representatives from major biomedical journals who attended the meeting agreed that public disclosure of information of relevance to public health emergencies should not be delayed by publication timelines and that early disclosure should not and will not prejudice later journal publication.
:: Researchers should be responsible for the accuracy of shared preliminary results, ensuring that they have been subjected to sufficient quality control before public dissemination.
:: Opting in to data sharing should be the default practice, and the onus should be placed on data generators and stewards at the local, national, and international level to explain any decision to opt out from sharing data and results during public health emergencies.
:: Incentives for sharing data should be created and tailored for each type of data generator and steward, while data management and analysis expertise is enhanced in under-resourced settings.