Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition

All Trials logo - click to sign petition

Click to go sign the petition

Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot 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.

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

How can families or clinicians make effective choices if we don’t have the relevant information?? Imagine the auto industry suppressing crash test results that didn’t go well! Not only is it ludicrous; imagine the impact on families who drove those cars.

On a related note, today Paul Levy posted about a patient who died from untreated complications and was omitted from a paper about this new surgical method; the paper said “There were no early complications,” even though the editor was told of the death!

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

Open data is such a big deal that in a 2009 TED Talk Tim Berners-Lee, inventor of the web, taught his audience to say out loud: “Raw Data Now! Raw Data Now!” His talk was titled The Next Web, and four years later it’s become real – that movement’s website tracks what people are doing with open data and the difference it’s making.

Medicine must catch up. 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:

  • 2011: I blogged about his funny, informative TEDGlobal talk Battling Bad Science. (What a hoot – he’s an entertainer!)
  • TEDMED 2012: The talk I interviewed him about was The Tip of the Missing Data Iceberg. He called suppression “the cancer at the core of evidence-based medicine.” Example: of 74 trials of antidepressants –
    • Only 38 (about half) came out positive – no better than a random coin toss
    • But 37 of the 38 were published (92% of them!)
    • And of the 34 failed tests, only THREE were published
  • So: an earnest doctor looks at the evidence, and sees that 37 of 40 published papers are positive. The stuff clearly works, right? Wrong; the publication process fell short of producing reliable information for the doctor (and the patient).

Impact:

  • Inhibits patients from getting good information.
  • Inhibits doctors from having good information, too, with which to treat their patients
  • It’s a severe disservice to the patients who put themselves at risk by being in a clinical trial to help improve the body of scientific knowledge.
  • Makes an absolutely mockery of evidence-based medicine

It took decades, I’m told, to change the culture of medicine so that docs are taught to immediately ask “What’s the evidence?” If the evidence has been made unreliable by editorial mistakes (or corruption), it weakens the whole system.

Please sign that petition – to benefit yourself, your children’s doctors, your elders’ doctors, your own doctors, and all patients.

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Posted in: hc's problem list | policy issues | research issues | shared decision making

 

 

Comments

3 Responses to “Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition”

  1. Here’s what I wrote in the “why” box on the petition:

    I signed this for all the reasons I put in this blog post. http://e-patients.net/archives/2013/06/raw-data-now-open-science-sign-ben-goldacres-alltrials-petition.html I mean, how can people make informed decisions about ANYthing (much less medicine) if they don’t HAVE the information?

    My junior high science teacher would SLAP me if I tried this. (Well, slap me on the report card, anyway.)

    I mean, imagine if the auto industry did this with the results of crash tests. Oh wait, they did, until Ralph Nader published “Unsafe At Any Speed.” Crikey, that book was 1965 – nearly a half century ago! Catch up, medicine!

  2. Here’s what I wrote in the “why” box on the petition:

    I signed this for all the reasons I put in this blog post. http://e-patients.net/archives/2013/06/raw-data-now-open-science-sign-ben-goldacres-alltrials-petition.html I mean, how can people make informed decisions about ANYthing (much less medicine) if they don’t HAVE the information?

    My junior high science teacher would SLAP me if I tried this. (Well, slap me on the report card, anyway.)

    I mean, imagine if the auto industry did this with the results of crash tests. Oh wait, they did, until Ralph Nader published “Unsafe At Any Speed.” Crikey, that book was 1965 – nearly a half century ago! Catch up, medicine!

  3. Confidential says:

    In college I was in a mental health clinical trial for women who had attempted suicide(combination of group and individual therapy) at the University of Washington in the 1990′s in which one of the other patients in our group (who was being treated by the head of the study Marsh Linehan) took her own life.

    When I later looked at the published results she was excluded her from the results because even though she was being treated by the head of the project (vs one of the researchers)she had also been hospitalized during the study so she was excluded but the research didn’t show her death anywhere.

    Just last year the head researcher March Linehaln wrote a long piece in the NY Times http://www.nytimes.com/2011/06/23/health/23lives.html?pagewanted=all that she in fact had also been hospitalized for a couple of years in college and attempted suicide many times and that is why she didn’t believe in hospital stays.

    The girls death doesn’t negate the effectiveness of treatment but it always bothered me

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