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Friday, January 28, 2011

Sharing public health data: necessary and now


"Data management is the most neglected area of the pub lic health research process." So argued a draft code of con duct for funders of health research, discussed at the National Academy of Sciences in Washington, DC, USA, last week. Ably led by the Wellcome Trust and Hewlett Foundation, the gathering included UN agencies, academics, public health bodies, develop ment organ isations, and journal editors. The vision is to increase the public health benefits of research by pro moting data sharing in the scientific community and beyond.
Currently, the outputs-and rewards-of research are based almost entirely on published papers in scientific journals. Incentives strongly favour publication, but not data sharing. Indeed, the extreme focus on publication creates disincentives to share data. This imbalance is at best inefficient, at worst profoundly harmful to health, preventing, as it does, other researchers from using datasets to make their own discoveries. There was broad agreement in Washington that funders should create a mechanism to translate the meeting's concerns into more precise principles, goals, and recommendations on incentives, infrastructure, and capacity building.

That said, there was also concern that although data sharing was a critical issue, it was a part of a much more troubling set of predicaments facing researchers in lowincome and middle-income countries. Data producers in low-income settings desperately want to be data users. But all too often those same scientists see researchers from western universities use their data, leaving little or no benefit behind for local research capacity. Calls for data sharing need to embed trust and equity as core values. Any global code of conduct must advance local ownership of data, local analysis, local communication, and local translation of research findings.
Scientists in low-income and middle-income settings want an opportunity to analyse data for their populations according to their own priorities. They want to be in the frontlines of national and global conversations about their country experiences. They want a seat at the table among those writing codes of conduct about the sharing of data. data that may well be about their own people. There is an obligation among all of us who hold a hegemony in public health research to assist colleagues wherever we can to sustain embryonic scientific cultures, to help build research institutions, and to address locally relevant questions about health. Data sharing is a vital and urgent matter. It is also a part of a much larger set of interdependent hazards that need our equal attention.

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