Estimates from the Global Burden of Disease can become a global public good only if the data are made public

As most of the global health community may be aware, today the long-awaited findings of the Global Burden of Disease 2010 (GBD2010) project were launched, to much fanfare and excitement, at a public event at the Royal Society, London. The launch coincides with the publication in the Lancet of seven original research articles describing the findings, along with additional commentary. Needless to say, the articles have been generously made free-access by the Lancet (but which is not the same as true open-access, under generally accepted definitions).

Amidst all of the enthusiasm, debate, and discussions on the findings of GBD2010 – for example, the reported reduction in under-5 mortality rates between 1990 and 2010 – questions remain over the way in which the findings have been generated and communicated. At the meeting, tweets excitedly announced that “insights from #GBD2010 are comparable to the human genome project”. But there are key differences between the two projects in their approach to transparency and data sharing, as many present at the meeting (such as Peter Piot, from the London School of Hygiene and Tropical Medicine and Richard Peto, from the University of Oxford) publicly commented. Notably, bold moves were made by the genomics community to commit to data sharing emerging from their sequencing centres as soon as the data were generated. This degree of transparency is not present for GBD2010. The project has produced some amazing interactive visualisations, which can be used to chart estimates of causes and risk factors for death and disability by country, age, and sex. But these data displays, however fun and nifty, do not equate to the type of transparency that is needed for full external scrutiny and reanalysis.

As many participants from the floor commented, we know that estimates from this type of work are subject to huge uncertainty. Changes to analytical choices and assumptions will modify those estimates and the attendant uncertainty. The global health research community is desperate to scrutinize the methods of the GBD2010 group, to rerun the underlying data with different assumptions or newer weightings, and to see how these changes impact on the overall estimates. It is encouraging that the GBD group have acknowledged this issue and are making assurances that data “will ultimately be made available”.  However, it is critical that GBD moves towards full and open public sharing of original datasets sooner rather than later, which would bolster the assertions of some in the GBD group that these estimates should not be seen as the definitive outputs of a global consensus on burden of disease, but rather a starting point for scientific discussion and debate.

 

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2 Responses to Estimates from the Global Burden of Disease can become a global public good only if the data are made public

  1. Shoibal says:

    Tried hard to get a look at the full texts supposed to be available free on the Lancet website sponsored by the Bill and Melinda Gates Foundation, but the site wouldn’t accept my login despite re-registering multiple times. So much for transparency and access.

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  2. Emma Veitch says:

    Dear Shoibal — So sorry to hear you have had problems getting to the original articles published in Lancet! Unfortunately, not a lot I can do to help as this is reliant on Elsevier’s systems for enabling access to subscription content. I think the original articles are free via Lancet, but you still have to login to access them. Good luck getting through the barrier….
    best emma

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