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Where are we so far?

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The missing data saga is long and complex, and involves patients around the world being put at risk, and some major players which have let us down to an extraordinary extent. Since we are almost at the end of it, this is a good moment to gather together what we’ve seen so far.

Trials are frequently conducted, but then left unpublished, and so are unavailable to doctors and patients. Only half of all trials get published, and those with negative results are twice as likely to go missing as those with positive ones. This means that the evidence on which we base decisions in medicine is systematically biased to overstate the benefits of the treatments we give. Since there is no way to compensate for this missing data, we have no way of knowing the true benefits and risks of the drugs doctors prescribe.

This is research misconduct on a grand, international scale. The reality of the problem is universally recognised, but nobody has bothered to fix it:

 Ethics committees allow companies and individual researchers with a track record of unpublished data to do more trials on human participants.

 University administrators and ethics committees permit contracts with industry that explicitly say the sponsor can control the data.

 Registers have never been enforced.

 Academic journals continue to publish trials that were unregistered, despite pretending that they won’t.

 Regulators have information that would be vital to improve patient care, but are systematically obstructive:

 they have poor systems to share poor summaries of the information that they do have;

 and they are bizarrely obstructive of people asking for more information.

 Drug companies hold trial results that even regulators don’t see.

 Governments have never implemented laws compelling companies to publish data.

 Doctors’ and academics’ professional bodies have done nothing.

Bad Pharma: How Medicine is Broken, And How We Can Fix It

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