Update 12 February 2013: A whole bunch of medical research charities have signed as part of a big gang of patient groups, including my beloved former employer Diabetes UK - hooray :D
"Trials with positive results are twice as likely to get reported as negative results," Goldacre said. "You can't make informed decisions about which treatment is best for the patient on the basis of just half the results, especially as it's the unflattering ones that are withheld."There seems to have been widespread under-reporting of clinical trial data along with an incomplete record of registered trials in the first place. This makes it harder to track what happened next. It also means that healthcare professionals only have part of the picture available to them when looking at which medications to consider for their patients.
Source: GlaxoSmithKline to publish clinical trial data, The Guardian, 5 February 2013
The #alltrials petition calls for all clinical trial reports to be published, not just the positive stuff.
I've heard of the petition mostly through following Ben Goldacre on Twitter where he's been enthusiastically tweeting about organisations who have signed, including a surprise entry from GSK (GlaxoSmithKline) today who are pretty much 'big pharma' by any definition, or haven't signed in the case of the Association of the British Pharmaceutical Industry, aka ABPI.
The Wellcome Trust has signed the petition and they are a big funder of medical research, they're also members of the Association of Medical Research Charities (AMRC) as are lots of other lovely charities and I hope those charities might also sign this petition.
Signing is A Good Thing and as Ben says in his recent blog post "The eccentric position is now not supporting alltrials.net. There is no serious defense for withholding information about clinical trials from doctors and patients. It is simply unethical, and it harms patients."
- Organisations who have already signed up to support the #alltrials petition
|Click to visit the AllTrials site|
It's important to have all the information to know which drug to prescribe (or which drug to take) but it's also important to know about other problems with drugs that might show up only after the drug is on the market when many more people are taking it. This is 'postmarketing surveillance' (the drug is now on the market and regulatory people keep their beady eyes on it to spot any problems).
Conveniently I heard a discussion about precisely this topic on Radio 4 this evening - Dr Margaret McCartney and someone from the MHRA (Medicines and Healthcare products Regulatory Authority) were discussing, with host Dr Mark Porter, how anyone - you don't have to be a doctor to do this - anyone can use the MHRA's Yellow Card scheme to report any side effect that they experience when taking any medicine.
The scheme was opened up to the public a few years ago - previously it had been just healthcare professionals that would fill these cards in. Now anyone can fill in the 'card' online. The MHRA has noticed that the number of these filled-in reports is dropping and is keen to raise awareness of the yellow card scheme.