Outing the nerd: let’s share data

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.

This post was published on 11/06/10 in Science.

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  1. Comment by Miriam in Vancouver, 11/06/10, 08:16:

    Nice! This is good news. I’m also inspired by the age of free data (and free information in general). That reminds me, I just finished reading Jan Wong’s China (which is getting old now, but the conclusions are still valid) and was left with similar optimism about this age of “free information” … in amongst lots of pessimism about the world situation of course …

  2. Comment by Muscleguy, 12/06/10, 10:00:

    Provided it works like a creative commons license and if I use your data I have to list it in the references and thus boost your citations. Then like a creative commons license the more your stuff is passed around the more you prosper. Then once people see this academics everywhere will see the benefit of it.

    It’s like in biology where if you publish in most decent journals you agree to share reagents with people, dna probes, antibodies etc within reason, in part so others can repeat your work. It gets tricky sometimes writing papers where you have used a pile of probes to make sure you have not only referenced all the probes, correctly but got the right person you got it from. It is more than worth it to keep the shareware system going. It is certainly less work than trying to pcr up a probe and get it sequenced.

  3. Comment by Ollie, 16/06/10, 11:59:

    This is good news. I work as a government data analyst, mostly with demographics and social data, and the effort it takes to pry information loose to construct research and evidence-based policy is terrible – and this is from our own government department! I can’t imagine how awful it must be to pry information from vast bureaucracies like the UN and World Bank.

    Still, this kind of information-sharing tends to require a strong cultural change – everyone needs to be on board, otherwise the will to share seems to curdle up and die. I hope it works out very well and very visibly for the World Bank and public health researchers, then maybe people in our little corner will take note and start with the information sharing.

  4. Comment by Hilary, 14/07/10, 09:12:

    I did a piece w/ John Wilbanks, from Creative Commons on creating an open web culture for science. You can listen to it here: http://earthsky.org/human-world/john-wilbanks-on-an-open-web-culture-for-science

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