Sharing research data to improve public health.

The purpose of medical research is to analyse and understand health and disease. A key and expensive element is the study of populations to explore how interactions between behaviour and environment, in the context of genetic diversity, determine causation and variation in health and disease. As funders of public health research, we need to ensure that research outputs are used to maxi mise knowledge and potential health benefi ts. In turn, the populations who participate in research, and the tax payers who foot the bill, have the right to expect that every last ounce of knowledge will be wrung from the research. Ensuring data are made widely available to the research community accelerates the pace of discovery and enhances the effi ciency of the research enterprise. In many research fi elds—from genetics and molecular biology to the social sciences—data sharing is already ingrained in how researchers work. In genetics and genomics, the pooling of studies of diff erent populations has led to an explosion of knowledge on the genetic determinants of human variation in health and disease. 1 Well-established repositories and tools enable researchers to access and interrogate shared data resources, and build on one another's work. 2 By contrast, this culture has yet to be widely embraced by the public health research community. Much of the infrastructures, technical standards, and incentives that are needed to support data sharing are lacking, and these data can hold particular sensitivities. And some researchers are reluctant to share data. 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 (continued from previous column) • Funders and employers of researchers recognise data management and sharing of well-managed datasets as an important professional indicator of success in research • Researchers creating datasets for secondary analysis from shared primary data are expected to share those datasets and act with integrity and in line with good practice, giving due acknowledgment to the generators of the original data Longer-term aspirations • Data collected for health research are made available to the scientifi c community for analysis which adds value to existing knowledge and which leads to improvements in health • The research community, particularly those collecting data in developing countries, develop the capacity to manage and analyse those data locally, as well …