International cooperative to share health data

Writing that “the importance of data sharing in advancing health is becoming increasingly widely recognised,” 17 major public health players entities, from the CDC and AHRQ to the Bill and Melinda Gates foundation and the World Bank, have banded together to form a sort of data cooperative around the Wellcome Trust and the Hewlett foundation. In a Lancet commentary announcing the initiative, Wellcome director Mark Walport and Hewlett president Paul Brest write that, while fields such as genetics and molecular biology, a mature data-sharing system has sped up discoveries and increased efficiency, public health is lagging behind.

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 progress of this research and its application for public health benefit.

Each organization will work within its own structure and their initial goals include the creation of data standards to facilitate sharing as well as increasing the prestige of creating public data sets. They acknowledge there will be some bumps along the way, but call on other organizations to join the initiative and to pursue the long-term goal of the widespread, fair and privacy-respecting sharing of public health data.

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