I have a confession. Behind all the sex and drugs talk, I’m just a giant data nerd. I believe that health research data collected with taxpayers’ money should be used to improve lives, not just to improve the career of a couple of scientists who got the research grant. And we’d improve lives faster if we played nicely together in the sandbox and allowed more brains to analyse the data we spend so much time collecting.
I’ve been working behind the scenes to try and help this happen, and have written about it in The Lancet, (pdf) and the Bulletin of the World Health Organisation, (pdf) (which ran quite a fun Round Table on the subject), with responses here, here,here, and here.
Now, I’m thrilled to say, the issue has been taken up by much bigger guns. An editorial in The Lancet declared the sharing of public health data “necessary, and now”. (pdf) The editorial refers to a meeting I was at in Washington earlier this month at which some of the biggest funders of public health research agreed in principle to work together to increase access to the data they pay for. We’re talking cleaned, coded, individual level data — raw ingredients which researchers with different perspectives and points of view can cook up into new solutions for health problems. There are lots of details to thrash out, but an agreement to start thrashing is a HUGE step forward.
It helped enormously that we had people in the room who have shown that data collected in household based studies can be shared without the sky falling. Osman Sankoh from the INDEPTH network showed off iSHARE , an initiative of researchers in India, Thailand and PNG which has since been joined by several African research sites. iSHARE provides on-line access to good quality demographic surveillance data that can be compared across sites. UNICEF puts its MICS household survey data online, so does DHS. Perhaps the most unexpected (and greatly welcomed) new member of the Data Liberation movement is the World Bank. The Bank has been an object of derision for years because it demands data of countries and then locks the data away in a database funded with public money. Even the governments that contributed the information, and the ones that paid for the database, used to have to pay to get anything out again. Then, in April: Boom! the World Bank threw its database open to the world.That set an important precedent; the age of free data is at hand, and no amount of whining by academics whose promotions depend on hiding information until they’ve got around to publishing papers about it will keep the new age at bay.