Last year, after GlaxoSmithKline (GSK) was fined $3 billions, then signed the All Trials campaign, we were wondering if other pharmaceutical companies would follow GSK plans to share detailed clinical trial data online for researchers. What if “their selective transparency is a smokescreen for a wider, more nefarious agenda, which is further control” warns @Truthman30…
In his recent post, Dr. David Healy explains the following:
- Do academics have wild dreams? GSK thinks not
- Rain on the Parade
- The GSMA-ESK Model
- Patterns of Deception
- Have you been fucked by AllTrials?
- What can be done?
- Let’s Do the AbbVie Again
- Boycott
Read Fucked – Apologies for the Language
by Dr David Healy, CEO of RxISK, May 21, 2014.
A DES Daughter's Blog 
Reblogged this on GSK : Licence To (K) ill and commented:
Great to see others are waking up.. thanks for the post. 🙂
With warm regards, @Truthman30.
Thank you, and you’ll be pleased to read DR Ben Goldacre comments below…
Kind regards
Hi there,
I’ve posted this on David Healy’s blog, it’s currently “In Moderation” so I’m posting it here too in case it’s of interest.
This blog post by David Healy is absurd.
The AllTrials campaign is really simple: it calls for all trials to be registered, with their full methods and results made publicly available. Where CSRs have been made, we call for those to be placed in the public domain.
Healy says we’ve created a situation where people are withholding CSRs: that’s simply absurd, this is precisely what we campaign against.
Healy says we’ve created a situation where CSRs are inappropriately redacted: that’s absurd, again, this is specifically what we campaign against.
Healy says we have created a situation where drug companies get to choose who has access to CSRs: again, that is ridiculous, this is exactly what we campaign against.
GSK have signed up to the AllTrials campaign: they join over a hundred patient groups, more than 75,000 members of the public, NICE, Wellcome, MRC, almost all academic and medical professional bodies in the UK, and a growing number around the world. When Bad Pharma came out, industry and others were able to pretend that information about clinical trials is no longer withheld. We’ve transformed that, triggered two select committees and put the policy issue on the map, created a coalition, unpicked a web of dangerous false reassurances by professional bodies, and made it impossible for industry to engage in glib denialism.
I’m delighted that GSK have signed up to AllTrials, along with all the other organisations. There are lots of problems in medicine. There lots of people and organisations who’ve done – and continue to do – things I think are harmful to public health. But where people do the right thing, I will applaud them for it. I genuinely think that’s the right thing to do. It doesn’t mean you’re part of an elaborate and complex conspiracy with people. It doesn’t mean you approve of everything they do at work and at home.
It’s easy, and attractive, to scream from the sidelines, and carry on screaming forever. It’s also possible to shout out clearly and succinctly about problems, try to set out and discuss clear solutions, floodlight the path forwards, and encourage people to go down it.
Lastly, and specifically, the issue of individual personal data. The AllTrials campaign doesn’t call for all the rich individual patient data from all trials to be simply posted publicly in the public domain: that poses too much of a privacy risk, because patients are identifiable in this data. This privacy risk isn’t as big as is claimed by some of those who seek to block transparency, but we decided that the issues around graded access control to IPD are too complex for a simple headline campaign, and we didn’t want to risk industry using the issues around protecting participants’ privacy as an excuse to derail discussion on the very important separate issue of access to methods and summary results. We were absolutely right: industry have repeatedly tried to pretend that AllTrials calls for individual trial participants’ personal data to be posted online, even though AllTrials is specifically focused on registration, methods, results, and CSRs. But as David Healy knows, most of the people involved in the AllTrials campaign, myself, Iain Chalmers and the BMJ included, are closely involved in pushing for greater transparency on IPD too. It is simply absurd to claim otherwise.
The comments section on this blog is clearly the worst place to say this, but it really is a big waste of everyone’s time to have to deal with the kind of misrepresentation and abuse that David Healy keeps posting. From past experience, I don’t believe that David will engage constructively with my taking the time to correct these repeated misrepresentations, and I honestly think that’s a shame. We’re all – most of us at any rate – trying to get things improved. Everyone’s time is short, and people run things like AllTrials in their spare time. If Healy has a better way to make things better, that’s great, he should crack on with it and get others behind him. If it involves misrepresenting campaigns, smearing people, shouting abuse, and hectoring from the sidelines, then I won’t be in.
As an addendum, three brief specifics, since time is short:
David Healy, above: “Consent processes in clinical trials were about telling you you were on a new drug that might be dangerous or might be involved in a marketing trial. Instead they have become a way for companies to justify hiding your data on the basis of a confidentiality clause they have slipped into the forms. Iain Chalmers, Ben Goldacre and AllTrials appear to have signed up to this.”
– This is complete and utter fantasy. Neither I nor AllTrials have signed up to this. David Healy will be unable to provide any evidence to show that we have. Consent forms being used to justify withholding information is exactly what I’ve campaigned against.
David Healy, above: “That what would be put in place was a mechanism that gave the appearances of transparency but in fact would lock academics into agreeing with GSK and other companies as to what the outcomes of their trials have been.”
– This is completely bizarre. AllTrials simply calls for all trials to be registered, with their full methods and results made freely publicly available, and CSRs where they’ve been created. It is impossible to argue that this “locks academics into agreeing with GSK and other companies as to what the outcomes of their trials have been”.
David Healy, above: “Rape is a loaded word these days”.
It’s always been a loaded word, David.
Thank you very much for visiting the blog and for sharing your thoughts Dr Ben Goldacre. 🙂
Will it be okay to ReShare your comments in a new post in order to try to give more exposure/visibility to your words? Any preference for the post “title”?
Best regards
@DES_Journal on Twitter
You’re very welcome to, especially since the comment has not appeared on David Healy’s website.
I guess, with regret, “David Healy misrepresents AllTrials and Ben Goldacre” is the clearest title.
done…
Dr David Healy has now also published your comment on his website
Thanks again for visiting this blog, it gave me a big morale boost, thank you 🙂
Ben posted exactly the same thing on my blog and Dr Healy’s blog. A little disappointed with such a generic response… but anyhow…
@Truthman30.
Yes Dr Goldacre’s comment is now live on Dr Healy’s website
cheers
yes it’s the same generic comment he has posted on mine, yours, and Healy’s blog… it will be interesting to see what Healy has to say in response… but personally I think some dialogue and explanation is needed as to what exactly is going on…
let’s see…
Looks like the debate is heating up over on Healy’s blog- also some very pertinent points made by 1boringoldman :
http://davidhealy.org/fucked/#comment-105968
@Truthman30.
Thanks for keeping me posted 😀
Yes, fascinating debate going on with now 22 comments http://davidhealy.org/fucked/#comments
cheers