The data must be free!


Ben Goldacre has once again produced some excellent writing on scientific data — he has written an article on data analysis and deworming trials, and it’s both interesting and important. I’ll be using it in my classes, because I do try to hammer home to my students the importance of an appropriate understanding of statistics.

The main point, though, is that science has a problem. In a discipline dependent on the free exchange of information, huge amounts of data are hidden away and locked up as ‘proprietary information’, and all that gets published are basically synopses and interpretations.

Two years ago I published a book on problems in medicine. Front and center in this howl was “publication bias,” the problem of clinical trial results being routinely and legally withheld from doctors, researchers, and patients. The best available evidence — from dozens of studies chasing results for completed trials — shows that around half of all clinical trials fail to report their results. The same is true of industry trials, and academic trials. What’s more, trials with positive results are about twice as likely to post results, so we see a biased half of the literature.

This is a cancer at the core of evidence-based medicine. When half the evidence is withheld, doctors and patients cannot make informed decisions about which treatment is best. When I wrote about this, various people from the pharmaceutical industry cropped up to claim that the problem was all in the past. So I befriended some campaigners, we assembled a group of senior academics, and started the campaign with one clear message: “All trials must be registered, with their full methods and results reported.”

How else can results be confirmed and replicated?


  1. Artor says

    This seems like a no-brainer. If the trial doesn’t have any findings it can report, then it wasn’t a legitimate trial.

  2. Rich Woods says

    Apologies if this is slightly off-topic.

    Today announced that “investors in pharmaceutical companies who together represent over €3.5 trillion in investment assets today support AllTrials. This group of 85 pension funds and asset managers are now to writing to the companies they invest in to ask them to set out plans to ensure their clinical trials, past, present and future, are registered and results reported.” One investor representative said, “Alongside doctors and their patients, investors also risk being misled … it is essential that companies publish complete and accurate information on trial results so that investment decisions can be fully informed.”

    Not there yet, but it’s a big and welcome step.

  3. freemage says

    Rich Woods: I’d say it’s a huge step–the companies are far more likely to be brought to heel by their investors than by appeals to the public good, and those same investors are more likely to have political clout necessary to actually legislate some of this, if the companies remain recalcitrant.

  4. Rich Woods says

    @freemage #3:

    My initial response was more jubilant, but it was tempered by the thought that other investors might not care about whether a product is effective, only that it sells. That €3.5 trillion is less than a tenth of global investment assets. But it’s a start.

  5. Raucous Indignation says

    We know this. All doctors trained in the era of evidence-based medicine know this. I laugh in the face of drug reps when they bring me results of “positive” clinical trials. Smarmy used car sellers, the lot of them.