Ben Goldacre: checking if clinical trials reported what they said they would

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Hats' off to Ben Goldacre and co for COMPare: Tracking switched outcomes in clinical trials
The COMPare Project
Centre for Evidence-Based Medicine Outcomes Monitoring Project:

Tracking Switched Outcomes in Clinical Trials

Retraction watch blog about it here: Did a clinical trial proceed as planned? New project finds out

Ben Goldacre said:
However, pre-specified outcomes are often left unreported, while novel outcomes that were not pre-specified are reported. This is an extremely common problem that distorts the evidence we use to make real-world clinical decision

...My personal view is that if a trial has misreported its outcomes, then the journal should simply issue a correction where the prespecified primary and secondary outcomes are reported.

Do hope they will be looking at PACE, which changed both the primary outcomes, and the recovery definition, after the protocol was published. Simply publishing the primary and secondaary outcomes as specified in the protocol would be a big step forward in transparency.
 
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This looks to be prospective, so PACE would not be included. Unfortunately the recent follow-up paper was only in Lancet psychiatry. Ben might find himself in a tight corner here. Maybe we should ask one of his student friends to look at PACE: Henry, Aaron, Phil, Ioan, Eirion, do you have the true whistleblower spirit??
 

user9876

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This looks to be prospective, so PACE would not be included. Unfortunately the recent follow-up paper was only in Lancet psychiatry. Ben might find himself in a tight corner here. Maybe we should ask one of his student friends to look at PACE: Henry, Aaron, Phil, Ioan, Eirion, do you have the true whistleblower spirit??
They could demonstrate they are willing to challenge their own institution since Oxford is involved in PACE but I doubt if they will.

But then they are only going to write a letter to journals and the lancet know that the PACE outcomes were changed. When patients told them that they choose to ignore it and instead accuse patients of harassment. Somehow I don't think they will do the same to Goldacre. But I doubt if they will bother to try to get papers corrected.
 

TiredSam

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This looks to be prospective
In the list of trials they've looked at so far, some of them were published in 2010 or 2011, so I was hopeful that it would be difficult not to include the PACE trials if they've looked at others from that period. Is that not the case?
 
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In the list of trials they've looked at so far, some of them were published in 2010 or 2011, so I was hopeful that it would be difficult not to include the PACE trials if they've looked at others from that period. Is that not the case?
I was confused by this but I think the 10s and 11s are Octobers and Novembers 2015 not 2010s and 2011s.
 

SOC

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Do hope they will be looking at PACE, which changed both the primary outcomes, and the recovery definition, after the protocol was published.
Anybody want to set up an office pool-type or other bet on this... winnings to go to the ME charity of your choice? :p Maybe to add to the fun, the money can go to a UK ME charity if Goldacre honestly evaluates PACE or to a Norwegian, American, or Australian ME charity if he doesn't?
 

Valentijn

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One of these days Ben Goldacre is going to have to choose between his loyalty to Simon Wessely and upholding the principles he keeps proclaiming regarding honest and transparent science. By following Wessely's lead, and refusing to look into PACE while using disparaging language for those who do, he's making a mockery of his purported mission.

Or maybe he's just waiting for Wessely to retire and/or die of old age, so the dilemma evaporates :rolleyes:

At any rate, I think his current behavior proves that he talks a big game, but lacks the fortitude to follow through when the going gets tough. But here's a hint: if your friend/colleague can't handle any academic disagreement from you, you're not a friend or a colleague. You're an underling who has been taught to dutifully do as you are told.
 

snowathlete

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Ben Goldacre not getting involved in PACE is a very peculiar situation. Normally he and his group would be all over it. At first he said on Twitter that he was busy with a book release, but since then nothing has changed. I think everyone who looks at this situation can see the conflicts of interest he has as potential reasons to want to turn a blind eye. So far, at least. The question is whether he will sucumb to that, or do the right thing. He said in the article above that he is not going away (in reference to challenging the problems outlined in the article). Well, we aren't going away either. We won't stop until the poor science of PACE is exposed and we have transparency of the data so their conclusions can be put to a fair test.

The PACE trial is such a big study with such big problems, that failure to get onboard would damage the credibility of anyone serious about correcting bad science. So we will see, but you can't jump on the bandwagon if it's already left town.
 

Esther12

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I just searched twitter for Goldacre and CFS.

Hate attacks by Chronic Fatigue extremists on researchers, & what those scientists rly say about CFS http://bit.ly/pAlXiU

How a small, vindictive community of CFS activists prevent discussion of the disease @maxpemberton http://qako.me/PZZmLP

Chronic Fatigue extremists persecute researchers whose results they don't like http://bbc.in/qsxAX1 http://bit.ly/ozMyJj

Then this from the Guardian:

  • "Ben has been critical of those who speak out about the poor quality research into Graded Exercise Therapy and CFS/ME"

    I have never done this. You have made this up. Making things up seems to be a recurring problem for some of the more aggressive campaigners on this issue, but there is no reason believe you represent the majority of patients with the condition, which can be crippling and is often poorly managed. Trials on CFS/ME should be properly reported just like any others.
    http://www.theguardian.com/commenti...als-withheld-doctors-tamiflu#comment-30501315

    He was responding to this comment:


    Ingheanrae
    6 Jan 2014 7:54

    Oh I wish Ben Goldacre were consistent in his views about transparency. Ben has been critical of those who speak out about the poor quality research into Graded Exercise Therapy and CFS/ME despite overwhelming evidence that the research was flawed. Could this be that some doctors have a vested interest in obfuscation and that when it suits them it's fine to withhold.
Edit:

Also just found this comment from him:

  1. Ben Goldacre said,
    November 9, 2007 at 12:38 am

    i’m not sure there are very many clear answers, but i have to say i think medically unexplained symptoms and the mechanisms of psychological factors in ill health are officially the most interesting thing in medicine right now, a huge amount of very real distress, little clear knowledge, and i’m totally moving into it as a dayjob, research if not clinical.
http://www.badscience.net/2007/11/b...entioning-psychosocial-factors/#comment-17961

Great "Life Scientific" this morning with @WesselyS on resilience, MUS, and persecution of his family and his work.


I've also just started a thread on an article where Goldacre was talking about publicly shaming those who misuse science: http://forums.phoenixrising.me/index.php?threads/doctors-have-decades-of-experience-fighting-“fake-news-”-here’s-how-they-win-feat-goldacre-quotes.50756/
 
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worldbackwards

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SOC

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I just searched twitter for Goldacre and CFS.
And people want to think he's all about truth, facts, and scientific integrity. He made no effort whatsoever to establish the truth of the crap he's passing along Show me the evidence, Goldacre. What violence? Has anyone heard anything even slightly credible about actual violence on the part of ME advocates?

How a small, vindictive community of CFS activists prevent discussion of the disease
Where has discussion been prevented? Oh, does he mean views of the disease different from his are not stifled? Is he saying that commentary that presents views different from his somehow prevents discussion because it gives a contrary perspective that might result in readers not following his thinking blindly? Does he mean people who follow his viewpoint don't want to engage in discussion that gives evidence contrary to their perspective and therefore they prefer to shut down conversation? I just don't understand where he gets this idea the we shut down discussion. If anything we're trying to open it up and they won't listen.

Few? Really? Few? If only. We wish only a few would dare to tackle the crap psychology makes up about ME. Again Goldacre ignores the fact that there is a huge number of people involved in psychologizing ME. Are his own statements not subject to his self-proclaimed critical assessment of fact?

He's more about criticizing ideas he doesn't agree with than about digging out the truth, despite how he tries to present himself. There's a lot more pseudo-skepticism there than true skepticism.
 

worldbackwards

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Where has discussion been prevented?
There's someone on that Bad Science thread going on about how, way back when, some people would round on anyone who spoke out against PACE in a nasty and concerted fashion until they shut up. Which is an interesting way of preventing discussion. But hey, maybe that person was hijacking the agenda and distorting the debate.
 

SOC

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There's someone on that Bad Science thread going on about how, way back when, some people would round on anyone who spoke out against PACE in a nasty and concerted fashion until they shut up. Which is an interesting way of preventing discussion. But hey, maybe that person was hijacking the agenda and distorting the debate.
So who, exactly, is preventing open discussion, the pro-BPS crowd or ME activists?

Classic bully tactic -- loudly accuse the one you are abusing of committing the very abuse you are dishing out, then produce a wide-eyed, pained and innocent look while your victim sits there with his mouth hanging open in appalled astonishment.
 

Esther12

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barbc56

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Taking tweets from several years ago that are possibly out of context and say Ben Goldacre feels this or that way about me/cfs doesn't always mean the conclusions are accurate. This is just as inappropriate when others do the same to us.

What I admire about Ben Goldacre and I have a lot of respect for him, is that he appears to not have preconceived ideas and proceeds from there. He keeps an open mind. He's a psychiatrist and works in the same department as Wessely but we don't know how much that impacts what he believes. That's guilt by association and that's a logical fallacy. I think his stance on big Pharma probably indicates his objectivity.

There may be reasons for animosity about me/cfs being a sore point on Bad Science.. The xmrv studies were looked at with a critical eye pretty quickly when negative studies were published.They were attacked from (supposedly) ME patients. Several years ago on a thread about ME/CFS and then a similar thread about Dr. Myhill some of the responses were so inappropriate it was shocking even though these were posted by the same few people.

But on the whole, I love the Bad Science Forum. Ben Goldacre really doesn't have much to do with the forum and in fact may not have his name on it because he doesn't have the time to give the proper attention to it.

I think it is disingenuous to say that any researcher who is not addressing the PACE trial is against us. We are living through this and because of that we, and I include myself, we sometimes think that everyone should focus on our issues. In a perfect world but the reality is that there are so many issues in this world.. Are we against research on illnesses here simply because they are not mentioned on the forum?

Barb

I've often wondered if others may have preconceived notions about him because he debunks a lot of alternative medicine. Who knows?
 
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