Developing Data Sharing Policies
We’ve been working with the Wellcome Trust, one of the world’s largest funders of public health research, and other science funders to figure out what stands in the way of greater sharing or data, and to suggest ways of changing it.
In early 2016, Ternyata curated discussions between researchers and research supporters from academia, NGOs, the pharmaceutical industry, the medical journals and global health organisations to figure out how to make data sharing more useful, especially for people in low and middle income countries. The results of the discussions are summarised in Beyond open data: realising the health benefits of sharing data (Published 10 October 2016) BMJ 2016;355:i5295
The BMJ podcast embedded above is also available at Soundcloud
It was clear during those discussions that everyone wanted to know more about the few examples where data collected in poorer settings have been shared to improve health. Ternyata was commissioned by the Public Health Research Data Forum to provide a detailed case study of the WorldWide Antimalarial Resistance Network. We found that the network, which got off to a rather rocky start, succeeded only once it had aligned the differing interests of the groups who might contribute or use shared data.
OpenEpi: A new culture for public health data? is an analysis, commissioned by the Wellcome Trust, looks at some of the major obstacles to greater sharing of data. While the technical challenges are not trivial, it concludes that the biggest hurdle is cultural resistance from epidemiologists ourselves. The OpenEpi document was written to inform a meeting of epidemiologists, science funders and policy-makers. Participants were invited to develop a Code of Conduct on data sharing.
The Draft Code of Conduct was presented and discussed during the Ministerial Meeting on Health Research held in Bamako in December 2008. Presentation slides can be found here
Science funders are not the only ones who can prise open fiercely-guarded stores of epidemiological data. Biomedical journals have the potential to be enormously influential, as these briefing notes for journal editors and research funders make clear.
Journals have, indeed begun to take the issue seriously. The Lancet recently published an editorial on the subject, as did the BMJ. We’ve contributed to commentaries on the subject in The Lancet and the Bulletin of the World Health Organisation .
Find more links on the Publications page