Group of health research funders calls for increased sharing of public health data

Public health research data "must be made more widely available in the scientific community if researchers are to unlock its full potential and make progress in public health, the world's top health funding agencies said Monday," Reuters reports. "In a joint statement, 17 major health research funders from around the world pledged to work together to support 'timely and responsible' sharing of data gathered during studies on health," the news service notes (Kelland, 1/10).

"Much of the data collection that could improve public health research is expensive and time-consuming. As public and charitable funders of this research, we believe that making research data sets available to investigators beyond the original research team in a timely and responsible manner, subject to appropriate safeguards, will generate three key benefits: faster progress in improving health; better value for money; higher quality science," the statement says (1/10). 

Reuters writes that signatories of the statement include the Bill & Melinda Gates Foundation, CDC, Britain's Medical Research Council, the National Institutes of Health (NIH) and World Bank. "Other signatories include the U.S. Hewlett Foundation, Australia's National Health and Medical Research Council, the Canadian Institutes of Health Research, France's National Institute for Health and Medical Research (INSERM) and the German Research Foundation (DFG)," the news service writes (1/10).

Though "data sharing is well-established and has accelerated the progress of research and its application for the public good" in such research fields as genetics and physics, "[i]n public health research, … the sharing of data [while growing more common] is not yet the norm, even within the scientific community," the statement notes. "[A]s funders of health research, intend to work together to increase the availability to the scientific community of the research data we fund that is collected from populations for the purpose of health research, and to promote the efficient use of those data to accelerate improvements in public health" (1/10).

In a Lancet Comment, published online Monday, Paul Brest of the Hewlett Foundation and Mark Walport of Wellcome Trust, both signatories on the statement, describe how sharing research data "accelerates the pace of discovery and enhances the efficiency of the research enterprise."

"Well-established repositories and tools enable researchers to access and interrogate shared data resources, and build on one another's work," Walport and Brest writes. "Too often, data are treated as the private property of investigators who aim to maximise their publication record at the expense of the widest possible use of the data. This situation threatens to limit both the progress of this research and its application for public health benefit."

In the piece, Brest and Walport address how the group of signatories proposes addressing some of the concerns groups may have over increasing access to research data on public health, such "fears that increased data sharing will create unacceptable risks for research participants" and the "substantial cost" associated with data sharing.

There are also concerns, they say, "that researchers in resource-poor settings doing much of the crucial work to generate public health research datasets will lose out to better-resourced researchers overseas, who have the skills and tools to rapidly analyse data. … We are committed to advancing data sharing in a way that balances the rights and responsibilities of those who generate and those who use data, and which recognises the contributions and expectations of the individuals and communities who have participated in the research - fair trade, not free trade."

Brest and Walport note that "the challenges in building the culture and resources needed to support data sharing are considerable" and address "build[ing] the capacity and skills in the research community to manage and analyse data, particularly in low-income and middle-income countries" (1/10).