I’ve wrestled the keyboard away from the AllTrials staff to send this email because, after two years of work – from tiny beginnings – with your help, the campaign has had a ridiculously good two weeks. It’s a cliché, so revoke my writing license, but this is all down to you and to your support.
Firstly, as you will hopefully have seen, major pension funds and investors managing a total of over €3.5 trillion in funds are now working with us to hold companies to account on their trials transparency plans. People who care about companies’ behaviour, as part of their day to day work, now care about withheld trial results. This means companies’ compliance with legislation and their own promises will be monitored like never before. €3.5 trillion is a big number, and one that companies will take notice of. Because of this coup, AllTrials was covered extensively in the financial press, with very long leaders in the FT and the Economist, alongside coverage in the Wall Street Journal and other international business press. This gives the issue a whole new audience, and a whole new level of seriousness. More investors have been in touch, asking to join, and asking for help taking up the missing trials issue with the companies they invest in. There’s much more to be done here, and we will relish it.
Then we launched the campaign in the US. The responses from American organisations have been overwhelming. The US is a very different place to the UK, or Europe, and we’ve realised there is huge value in having a whole office there, managing relationships with patient groups, companies, professional bodies, and journalists. Just like when we launched in the UK, people in all kinds of organisations have told us they’re glad AllTrials is starting in the States, because they have been worried about this issue for a long time, but didn’t know what to do about it, especially as raising the issue can feel (appallingly!) controversial.
There’s huge potential to build a campaign in the US, and a lot at stake. Meanwhile, as we were doing all of this – just to remind you – we were also involved in the court case with Richmond Pharmacology that could have set progress on transparency in the UK into a sharp reverse.
Why am I telling you all this? Because the first good evidence on missing trial results in medicine was published in 1980. The first strong prominent call for a trials register was in 1986. Since then there have been dozens of studies published on the prevalence of missing data, and endless broken promises, but the problem has not been fixed. Academic publications are a necessary first step to getting a global public health problem like this fixed. But they are not enough on their own.
The real day to day business of the AllTrials campaign is a grind. It is admin. It is bottomless. This is how change happens: endlessly setting up meetings and seminars around Europe and the States, hours on conference calls and webinars, days pouring over impenetrable policy positions and dull consultation documents, constant coordination with teams in the States and UK, and collaborators around the world, dreary travel for staff to spend 2 hours face to face persuading and befriending, unending phone calls, and more. As someone who sits on his arse writing academic papers – like the people I criticised in the previous paragraph – I am humbled to see AllTrials staff do real work. Their work, paid for by you, is the kind of stuff that cannot be done as a hobby. It has moved the campaign onto another level, and made this issue unignorable.
Obviously I am asking you for money. That’s because I can now see, more than ever before, that change happens because good people, with experience at creating change, devote their full time career and working week to making it happen. Everything that AllTrials has achieved so far has only happened because of your collective support, your targeted emails to policy makers, your endorsement, your help in getting your organisations signed up, and your money, that pays for the grinding work to be done.
If we stopped tomorrow then you and I, and everyone involved, could probably all award ourselves a point. But we have not won, there is more to do, and we are at a tipping point. If you can give any sum of money, to keep AllTrials staff doing the kind of boring, tireless, repetitive campaign work – the stuff that would make you or I scream our tongues out with boredom – then please, please do. Their phone bill is due, their Windows XP install needs updating, and Sile needs an economy class ticket for yet another Groundhog Day meeting, with yet another person, who might just help everyone do the right thing by patients, and get all trials reported.
Dr Ben Goldacre
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