{"id":14851,"date":"2013-06-17T09:36:50","date_gmt":"2013-06-17T13:36:50","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=14851"},"modified":"2013-06-17T09:36:50","modified_gmt":"2013-06-17T13:36:50","slug":"raw-data-now-open-science-sign-ben-goldacres-alltrials-petition","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/06\/raw-data-now-open-science-sign-ben-goldacres-alltrials-petition.html","title":{"rendered":"Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition"},"content":{"rendered":"
\"All<\/a>

Click to go sign the petition<\/p><\/div>\n

Last year during TEDMED 2012, in\u00a0\u201cThe cancer at the core of evidence-based medicine\u201d: Ben Goldacre on the missing data<\/a>,\u00a0we covered the vitally important news that a lot <\/i>of medical research has gone missing, leading to a severely corrupted foundation for evidence-based medicine. If you haven’t read that quick post with 6 minute video interview, please do.<\/p>\n

Goldacre said he’s starting a site called AllTrials.org to find and publish the missing data. Yesterday I discovered\u00a0that process is underway<\/strong>, and they’re collecting signatures on a petition. Please go sign it.<\/a>\u00a0(The hashtag for the movement is #AllTrials.)<\/p>\n

How can families or<\/i>\u00a0clinicians make effective choices if we don’t have the relevant information??\u00a0Imagine the auto industry suppressing crash test results that didn\u2019t go well! Not only is it ludicrous; imagine the impact on families who drove those cars.<\/p>\n

On a related note, today Paul Levy posted about a patient who died<\/i>\u00a0from untreated complications<\/a>\u00a0and was omitted from a paper about this new surgical method; the paper said “There were no early complications,”\u00a0even though the editor was told of the death!<\/p>\n

Both that example (a single case, omitted from the literature for some reason) and Goldacre’s broader movement (entire trials<\/i> omitted from the literature) point to an increasingly clear picture that the evidence we’re taught to follow needs a LOT of scrutiny.\u00a0The remedy is Open Science<\/a>. Importantly, the definition includes open data<\/b>, so others can check the reasoning for what was included and what was not.<\/p>\n

Open data is such a big deal that in a 2009 TED Talk<\/a> Tim Berners-Lee, inventor of the web, taught his audience to say out loud: \u201cRaw Data Now! Raw Data Now!\u201d His talk was titled The Next Web, and four years later it\u2019s become real \u2013 that movement\u2019s website<\/a> tracks what people are doing with open data and the difference it\u2019s making.<\/p>\n

Medicine must catch up.<\/i><\/b> Raw data now!
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Some links to Goldacre videos and excerpts from prior posts – this will be old news to people who’ve followed this blog for years:<\/p>\n