Tell WHO to demand publication of all clinical trials

[MeSci]

This petition is not very well drafted as it fails to mention the need to anonymise data, and also appears to naively assume that research publication automatically leads to changes in clinical practice, but still worth signing, I think.

From heart drugs that cause heart attacks to anti-depressants that cause suicide, the drug industry has proven that it puts profit before people when deciding what information to share with us. It comes as no surprise that the information we do get is biased. Tests that show positive results are twice as likely to be made public.

Culture is starting to shift towards more reporting, but progress is slow. In 2007, the US required that researchers there must post drug trial results online or face fines of up to $10,000 a day -- but a study in 2012 showed that although 4 out of every 5 trials covered had ignored the law, not a single fine had been paid.

The World Health Organisation has a chance to move the debate radically forward. If it demands that all trials, past and present, release their results, drug companies and governments worldwide will pay attention. Add your voice now and help make sure our doctors have all the information they need to care for the sick.

Petition wording:

We call on you to ensure doctors and the public have access to all the information we need to get the best possible treatment. Every clinical trial, past and present, should be made public and results should be released within one year of their completion so the most up to date information informs patient care.

The petition is here.

 

[Sasha]

Done! Thanks for posting.

 

[CantThink]

Done

 

[barbc56]

Thanks @MeSci !

You can also give your imput directly to WHO.

http://www.who.int/ictrp/results/en/

Another petition from AllTRIALS.
http://www.alltrials.net/petition/

Countering the myth that transparency means personal data will be released.

The AllTrials campaign is not calling for individual patient data to be made publicly available. We expect all clinical trials past and present to be registered and results reported including clinical study reports where these are produced. There are a number of initiatives under way that would allow independent researchers access to anonymised individual patent data from clinical trials without making that data widely publicly available.

http://www.alltrials.net/find-out-more/faq/

The Alltrials web site includes important information about this topic including how people can get involved in the campaign whether on a personal or group basis..
http://www.alltrials.net

Barb

 

[MeSci]

The Alltrials web site includes important information about this topic including how people can get involved in the campaign whether on a personal or group basis..
http://www.alltrials.net

Barb

Yes - I think I must have signed up to something with AllTrials as I get emails from them. I obviously support their demands for transparency, but I seem to recall that they have/had some questionable connections. I can't remember what these were/are though.

So I look carefully at their emails, petitions, etc., before putting my name to anything. I think I've taken a few actions recommended by them.

 

[barbc56]

That would probably be Ben Goldacre a British Psychiatrist and Skeptic. He is one of the founders of AllTrials.

I find him credible as well as as other organizations affiliated with AllTrials.Some do not share his views because he's against a lot of alternative treatments.

He just wrote a book called Bad Pharma which surprised many of his critics as they have often called him a Big Pharma shill.

Barb

 

[biophile]

He just wrote a book called Bad Pharma which surprised many of his critics as they have often called him a Big Pharma shill.

I wonder if his next book will be "Bad Psychs", which would surprise his critics who suspect that so-called Wessely school CBT/GET are all off-limits to Goldacre's brand of skepticism? What would actually surprise me is a book on "Bad Placebo", as Goldacre appears to abandon skepticism in his uncritical belief and hyping of the wonders of the placebo effect.

 

[user9876]

I wonder if his next book will be "Bad Psychs", which would surprise his critics who suspect that so-called Wessely school CBT/GET are all off-limits to Goldacre's brand of skepticism? What would actually surprise me is a book on "Bad Placebo", as Goldacre appears to abandon skepticism in his uncritical belief and hyping of the wonders of the placebo effect.

I wonder if rather than the psychs being off limits to Goldacre its actually the wider medical community. Its easy to blame big business for all the wrongs going on in the medical world rather than looking at how doctors behave. Those promoting CBT don't have a big pharma organization to hide behind and its not just ME look at the debates around CBT for psychosis where NICE push CBT despite trials showing it is ineffective and the SMC spin papers supporting CBT. But in the case of big pharma promoting their drugs giving freebees to doctors the doctors are taking these but the criticism is on pharma for doing this. My concern about Goldacre is that he thinks the medical world have it right and others (alternative medicine and big pharma) are trying to corrupt their science. But he doesn't look at the basic medical methodologies and the failings there or the 'conventional wisdom' that has build up over time with the medical profession that had be actual evidence base. I worry that he promotes a science that I see as black box testing with a cookbook of statistical methods as science rather than a search an understanding of mechanisms and reasoning from basic principles of how biological systems work.

 

[barbc56]

@biophile @user9876

Other than that, do you plan to sign the petition or do you believe that because Ben Goldacre also believes in complete transparency we shouldn't sign either one? This could sabotage an issue that's important to our community.

While there may be times that who endorses something swaying my decision, in this case, I have signed this independently of who endorses it.

I would think there are people who signed who are considered as speaking for our community whom I would disagree with on most other issues.

So back to the topic of this thread?

Barb

 

[user9876]

@biophile @user9876

Other than that, do you plan to sign the petition or do you believe that because Ben Goldacre also believes in complete transparency we shouldn't sign either one? This could sabotage an issue that's important to our community.

While there may be times that who endorses something swaying my decision, in this case, I have signed this independently of who endorses it.

I would think there are people who signed who are considered as speaking for our community whom I would disagree with on most other issues.

So back to the topic of this thread?

Barb

I have no problems signing such a petition and as I am a big believer in transparency and I agree it doesn't matter who else supports it. However, I think it is important to understand that whilst publication of trial results is necessary it is not sufficient to gain a good understanding of the research. This is particularly true where summary stats are used. But also protocols can be designed so that they get the desired result.