Two years ago I started discussing the problem of withheld trial data with Sense About Science. Back then, the situation seemed hopeless, and I was angry: many institutions were in denial, and many past efforts to fix the problem had ground to a halt. In January 2013 Sense About Science formally took this issue on as a core campaign, and with others we started the AllTrials campaign. Since then, progress has been phenomenal. WHO, the European Commission and the US, UK and Canadian Governments have finally been persuaded to take further action. Hundreds of organisations have agreed to help, including the great and good of the medical establishment. Eighty patient groups signed up in one day. We have seen lots of new promises, and many of them are credible and formal.
The future of clinical trials reporting is going to be different. But that’s not enough.
Doctors don’t only use medicines invented after 2014: we use treatments that came on the market five, ten, twenty years ago, and more. All of this information is vital, but much of it is still being withheld. Getting access to these trials – on the medicines we actually use today – is much more important than changing reporting standards for new drugs, and could have a huge impact on medicine.
This means we need action. We know the companies and organisations which hold this information. At the moment, there are huge differences between them: some still defend secrecy, or claim that sharing is impossible; while others have exposed that claim, by taking significant steps towards greater transparency. Many are staying silent. We think they are hoping that the AllTrials momentum will fizzle out.
That’s not going to happen. In the New Year, Síle Lane and I will be banging on the doors of individual pharma companies to ask them what they’re doing to fix this problem. And we will be announcing some very interesting new projects and tools.
All this progress has only been possible because you have been involved. We built an organised and coordinated campaign, with doctors, academics, publishers and tens of thousands of patients working alongside experienced full-time campaigners. We all have been able to turn decades of grumbling into decisive, targeted action.
But the campaign needs money to be sustainable. In the past two years many of you have donated to AllTrials. You have given generously, and we’ve reached half our initial target: that’s how we got this far. Now we need to find the other half. If 80% of you gave just 10 pounds, dollars or Euros each, we can keep going. The campaign team will be able to insist on meetings with companies, and know that we can afford to pay the fares. We can keep up the coordinated campaign.
If you can give this amount, or if you can give anything at all, please donate here:
If you can’t, we’ll continue to value the help and support you give in other ways, and we know that you will spread the word (especially to your richest friends…). Together, we will reverse the waste and injustice of unreported clinical trials, and make medicine better.