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Development of the joint statement of purpose

Background

In recent years, many of the major funders of public health research have adopted policies on data sharing. International institutions and major medical journals have also made declarations about the importance of increasing access to public health data.

In 2008, the World Health Organization and the Wellcome Trust initiated discussions about the development of a common Code of Conduct on the sharing of data of public health importance. The aim was to develop principles and targets that would meet the needs of researchers and science funders alike, while providing the flexibility for individual institutions to respond to different circumstances.

The Wellcome Trust commissioned an analysis of obstacles to data sharing, which concluded that obstacles could be grouped into four major areas: incentive-related, capacity-related, ethical and technical. Together with the WHO, the Wellcome Trust convened a meeting held in London on 6 October 2008 to discuss potential ways of overcoming these obstacles. Epidemiologists and data managers from several continents gathered with a number of representatives from governments, international organisations and major funders of public health research. Together, they suggested core principles for a Code of Conduct.

A draft version of the Code was then presented at the Global Ministerial Forum on Research for Health, held in Bamako in November 2008. Further discussions were held with groups interested in the implications of the Code throughout 2009. These included editors of major medical journals, and the funders and consumers of health research grouped in the H8 (which includes WHO, a number of other United Nations agencies and several major funders of public health research).The Hewlett Foundation commissioned a paper looking specifically at data sharing issues from the point of view of foundations interested in capacity development in developing countries. 'The Lancet', the 'British Medical Journal', the 'New England Journal of Medicine',' PLoS Medicine' and 'Nature' all published commentaries calling for greater sharing of data of importance to public health, and 'Annals' and the 'BMJ' now require authors to provide a statement on what data, if any, are available to other researchers, and under what conditions.

The H8 published a paper on data sharing in January 2010 which committed to develop a Code of Conduct in data sharing. In April 2010, the World Bank announced that it would make its data base open access, and would adopt disclosure as the default position for both data and documents relating to lending.

The informal working group developing the Code were in active discussions with all of these partners. They also liaised with groups such as MalariaGen and INDEPTH that have been involved in increasing access to data generated by their research partners, and those such as UK Data Archive that have experience with developing infrastructure for sharing. Their contributions and experiences were used to develop a revised Code of Conduct.

The Foggy Bottom meeting

The revised Code was discussed at a high level meeting of research funders and partners from the research community that was convened by the Wellcome Trust and the Hewlett Foundation and held at Foggy Bottom, Washington DC on 25 May 2010.

Meeting participants felt that action to enable more effective re-use of research data was urgently needed, but legal and institutional constraints required a more flexible framework.

The joint statement is the result of those discussions and follow-on dialogue with the members of the Heads of International Research Organisations group. Signatories are committed to engaging with other funders of health research (especially those based in developing countries) as well as with other members of the research community in order to invite greater participation in discussion, faster implementation of agreed measures and more effective progress towards our common purpose.

References

  • Pisani E, Whitworth J, Zaba B and Abou-Zahr C. Time for fair trade in research data. The Lancet 375, p703-705.
  • Pisani E and Abou-Zahr C. Sharing health data: good intentions are not enough. Bulletin of the World Health Organization. Volume 88, Number 6, June 2010, 401-480.
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