Data collection for the Global Burden of Disease project

From Epic Measures:

Of the 2 billion deaths since 1970 the new Global Burden would ultimately cover, only about 25 percent had been recorded in a vital registration system accessible to researchers… [Christopher Murray’s] proposal to the Gates Foundation had said the entire project would take three years to complete, giving a deadline of July 2010. Three years to gather and analyze all available details about the health of every person on Earth…

Different countries brought a varied set of challenges. In China, regulations forbade almost all core health data from leaving the country, so Chinese partners had to do analyses and share the results with Seattle. U.S. states, by contrast, sold annual databases of their in-patient hospital users to anyone in the world, for prices ranging from $35 to $2,000. In Ghana, almost the exact equivalent records were available free.

In Nigeria, Africa’s largest country by population, the data indexers surveyed hospitals, police stations, health clinics, libraries, colonial archives, and even cemetery plot records. In Libya, the latest census and civil registries turned out to be available online, but only after clicking through seven Web pages written in Arabic. In Iraq, during the end of the American-led occupation, months of spadework revealed the existence of two recent government household surveys. These would help estimate how many Iraqis were being killed or injured by war, as opposed to other causes, a hugely disputed topic. Trying e-mail, Skype, and phone, Speyer finally managed to reach the Iraqi official in charge of statistics and information technology. “She said they’d be happy to share the survey microdata with us, and I said, ‘Can you e-mail it or upload it to a website?’” he recalls. “She said no. She burned it onto a CD and told me I had to pick that up in the Baghdad Green Zone.”

…Another completely separate stream of information, and a big one, came from others’ published scientific studies. About what? About “health.” There were ten thousand articles a month published with a reference to epidemiology. To the maximum degree possible, Murray wanted all of those results pulled, digitized, and entered into Global Burden, too. Put another way, a fraction of a fraction of the data supplied to the study’s scientists was to be everything everyone else had ever discovered.

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