Stuff that occurs to me

All of my 'how to' posts are tagged here. The most popular posts are about blocking and private accounts on Twitter, also the science communication jobs list. None of the science or medical information I might post to this blog should be taken as medical advice (I'm not medically trained).

Think of this blog as a sort of nursery for my half-baked ideas hence 'stuff that occurs to me'.

Contact: @JoBrodie Email: jo DOT brodie AT gmail DOT com

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Showing posts with label AllTrials. Show all posts
Showing posts with label AllTrials. Show all posts

Friday, 10 January 2014

Delighted that #WDDTY have reported on the #AllTrials campaign

In the past I've been a tiny bit(1) critical of both the content and editorial stance of the magazine 'What Doctors Don't Tell You'.

I am really pleased though that they've recently acknowledged (admittedly indirectly by not actually mentioning them by name) the work done by Ben Goldacre, Sense About Science and many others to put pressure on the pharmaceutical industry, via the Government, to make its full trial data available, not just the good bits.

Here's what's on WDDTY's website - UK government demands drugs industry comes clean on hidden data(2) (7 January 2014) What Doctors Don't Tell You 
The first paragraph mentions that the UK Government wants greater openness from pharmas after having spent £424m stockpiling Tamiflu without being able to be certain if it works.

The second para mentions that the Public Accounts Committee wants all trial data from all prescription drugs published.

Then it cuts off and the last bit is hidden behind a login but this is visible on cached copies, or from this copy. WDDTY highlights the source of the news is the BBC's website, from 3 January 2013.

From a search on the BBC's site I assume it's referring to this page - Lack of drug data 'extreme concern' (3 January 2014) BBC News which mentions all the stuff above (Tamiflu, £424m, Public Accts Cttee, concern at lack of data) and it also mentions the AllTrials campaign which WDDTY leaves out in a sort of reverse cherry-pick manoeuvre.

The AllTrials campaign has been running for over a year now and many organisations have signed it, though I don't believe WDDTY have done so yet. This is both expected and surprising. Expected because the campaign is organised by people and organisations that WDDTY is critical of and has been criticised by, and surprising because the campaign is aimed at the pharmaceutical industry. Given that WDDTY sets itself contra 'Big Pharma' it would seem they'd want to be involved with something that's allied to their goals, however I suspect it will be a while before there's any 'the enemy of my enemy is my friend' type of rapprochement.

A number of people have posted information to WDDTY's Facebook page about the AllTrials campaign although all of these messages appear to have been promptly removed and those posting the information have also been blocked. I did try to post information there but had already been blocked (and yes, I was polite in my disagreements), so blogged about it instead back in October.

Still, it's good news that they've now decided to highlight the aims of the campaign even if they've been a smidge untransparent about its origins, it's a start I suppose.



(1) OK quite a lot
While there's some good sense in the magazine this is spoiled by an awful lot of very poor advice floating around in a marinade of ambiently bad advice. There's been a tendency also to overplay fairly small studies and not really put them into contex, which can be very misleading. On top of that several of the companies advertising in the magazine have made some claims that were not quite as they should be. Consequently there have been a number of complaints made to the Advertising Standards Authority upheld and recorded as adjudications on their website.

The editors have also behaved quite unusually when people have asked for evidence or pointed out discrepancies.

They've also claimed that skeptics are trying to 'ban' the magazine (I'm not aware of anyone who's actually called for that, if they have it's certainly not been picked up and campaigned on). Everyone's perfectly happy that the magazine should be printed, it's been published for 20 years for subscribers after all, but doctors / scientists / skeptic bloggers etc are concerned at it being given a prominent place in supermarkets, a kind of endorsement. I don't want it banned, I just don't want it sold in supermarkets.

Annoyingly, and I think misleadingly, the promotional material that WDDTY have been putting out about their magazine uses this claim that people are trying to ban the magazine. I think that's a bit cheeky.

(2) This is a 'do not link' link. Amusingly WDDTY's editor, Lynne McTaggart, has claimed that skeptic bloggers use this form of linking to do SEO damage to the magazine. The link cannot do that, it merely doesn't add any extra 'google juice' to the link. Whenever a site links to another site that's recorded by search engines* as the first site recommending the second. Using a neutral link means there's no recommendation, but equally there's no damage.

*Or at least has been recorded in that way in the past, search engines are changeable beasts.




Tuesday, 8 October 2013

Dear #WDDTY and supporters - please sign the #AllTrials petition if you've not already done so, thank you

Further down is the explanation of why I've posted this on my blog and not on WDDTY's Facebook page (I did try, honest).

All Trials



Has WDDTY and its supporters signed the #AllTrials petition? If so - hooray, if not might I persuade you?

While the petition is organised by Ben Goldacre, the BMJ (British Medical Journal) and Sense About Science - wait, come back! :) - which I can only imagine might annoy you, I'm hoping the fact that it is actually asking pharmaceutical companies to make available ALL of their clinical trial data (not just the good bits) might cheer you up no end. This is a petition that has already annoyed some pharmaceutical companies, so for that reason alone I hope you might sign it :)

Some of the drug companies have acknowledged the need for a cultural change but others have said they don't want to hand over their data and that it is 'commercially sensitive' - it might well be, but patient safety is more important http://www.alltrials.net/2013/2338/

We might disagree on many things but I hope we can all agree that more information, and not being allowed to hide unfavourable information about drugs, tends to be 'a good thing'.

More on the petition here http://blogs.biomedcentral.com/bmcblog/2013/08/12/a-call-to-action-from-alltrials/

The AllTrials website http://www.alltrials.net/about/ and they are also on Facebook https://www.facebook.com/alltrials

You are not harming the reputation of WDDTY or alternative therapists, or benefitting skeptic bloggers, or The Times, by signing this petition. It is quite a separate thing, aimed at ensuring pharma can't hide the data it might want to keep hidden.

Thank you, Jo


Edit seconds after posting...

Here's Ben Goldacre, author of the book Bad Pharma (which is, y'know, critical of some of pharma's practices) writing about why he wrote that book: "I wrote this book because we need to fix a set of problems that have been allowed to persist in my own profession – medicine – for far too long."

This is why I get a bit miffed when people say skeptic / science / health bloggers are in the pay of Big Pharma. No!




Earlier today I received a tweet from whoever's running the @_wddty (What Doctors Don't Tell You) account asking me to "please go to our fb page for replies and statements. Twitter is not meant to be used for giving arguments."

While I'm not entirely in agreement that there are any proscriptions on Twitter's use (I've had some amazing and good-natured arguments on there over the years, sometimes quite productive and I've regularly changed my mind about things) I concede their point. If you've been away from Twitter for a few hours and come back to a bunch of tweets (the other day I found myself copied in on 19 tweets that were really just a conversation between two other people) it's a bit ennervating. Also I don't think that WDDTY have a dedicated responsive social media presence (they may want to have a bit of a think about that though).

So I'm actually fine with interacting with them on Facebook if that's their preference, however I just tried to post the text above on their page and received this unloving message. Possibly I've been blocked from commenting as other skeptic blogger types have found. It could be a glitch though - none of my (reasonably friendly and not all that impolite, I thought) messages showed up the other day and I had assumed I was blocked, only to find them reappear an hour or so later.


Edit: 20 November 2013
Although it happened a couple of weeks ago I have now been blocked from commenting on WDDTY's Facebook page and some (all?) of my previous comments appear to have been removed.

Clearly the wall is WDDTY's space to use as it pleases and it's perfectly within its rights to block me. What I found disheartening was that all of my posts there were civil, had I been rude or spamming - well fair enough, more fool me and that sort of behaviour should lead to someone being blocked. But WDDTY is simply removing the voices of polite disagreement which I think is a shame. Oddly there were some other, quite robust, comments from skeptics - not quite rude but not pulling any punches - and these remained for longer than mine. Perhaps I am just jealous ;)




Wednesday, 6 February 2013

I hope lots of medical research charities will sign the #alltrials petition

UPDATE 9 February 2013: The AMRC (Association of Medical Research Charities) signed the petition yesterday morning - but of course I'd still like to see other health / patient charities (AMRC members and non-members) signing up.

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
http://www.alltrials.net/supporters/pin-statement/


"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."
Source: GlaxoSmithKline to publish clinical trial data, The Guardian, 5 February 2013
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.

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."

All Trials
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.