DISCUSSION

Data sharing: reaching consensus

Jimmy Whitworth

Wellcome Trust, Gibbs Building, 215 Euston Road, London, NW1 2BE, England (e-mail: j.whitworth@wellcome.ac.uk)

Pisani & AbouZahr write passionately about the need to change the culture of data sharing in public health research.¹ They explain why this is in everybody's best interests and outline ways in which the main obstacles can be overcome. This is laudable and much appreciated; it is time for a change, the current situation is unacceptably inefficient in terms of scientific progress and value for money from research.

The two authors challenge institutions, in particular research funders, to take charge of the agenda to make these changes happen. They call for leadership but, while funding agencies are clearly influential and can certainly facilitate changes in scientific behaviour and culture, they are unlikely to be able to effect all the changes called for by Pisani & AbouZahr. While funders might support and encourage, we are not in a position to dictate changes to professional structures, to create career paths for scientific disciplines at academic institutions, nor to determine scientific reward mechanisms.

What is required as a first step is the facilitation of dialogue and the building of consensus between all interested parties, including funders, researchers, institutions, journal editors, ethics committees, multilateral agencies and governments. No one agency has the mandate or the legitimacy to take this whole agenda forward unilaterally. A more sustainable and palatable pathway be will to build consensus and to create a broad coalition.

It is worth reflecting on why data sharing is not more commonly practiced among epidemiologists and public health researchers. Pisani & AbouZahr point out many of the constraints, such as the lack of appropriate incentives from employers such as research councils, foundations and universities, the short supply of data managers especially in low- and middle-income countries, and concerns over the control and ownership of data. There are also technical issues, data sets for cohort studies are more complicated than standard genetic data sets because of their longitudinal nature, and there are no off-the-shelf tools available for managing and curating standardized and interoperable longitudinal data sets.

Overcoming these constraints requires a broad consensus among stakeholders. Indeed Pisani & AbouZahr seem to acknowledge this. When they write that "we" need to develop a search portal, invest in training in data management, develop reliable citation standards, develop methods to track the value of data sharing, and so on, these are clearly tasks for the wider scientific community.

Of course, individual institutions - and funders - can take the initiative over certain aspects of the agenda and form alliances with those agencies that can help in other domains. Indeed, the Wellcome Trust has already led various initiatives in this field, including convening international meetings of public health researchers and funding agencies, and has raised these issues at meetings of public health policy-makers and international journal editors. The Trust is currently revising its grant conditions about data sharing, which will be strengthened and, importantly, will provide more guidance about the technicalities of how to share data more effectively. We are ready to take the lead in those areas, where it is appropriate for us to do so, and we are open to the formation of alliances with other agencies that can help to facilitate progress in other areas.

Competing interests: Jimmy Whitworth is employed by the Wellcome Trust, which commissioned Elizabeth Pisani to work on its data-sharing project.

References

1. Pisani E, AbouZahr C. Sharing health data: good intentions are not enough. Bull World Health Organ 2010;88:462-6.