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

Discussion in 'Other Health News and Research' started by Simon, Dec 4, 2015.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Assuming I only get one question...please help fill in the Y and X's...

    "So Dr Goldacre, please help me reconcile your 2 opposing behaviours - on the one hand you espouse and lecture on X, but on the other hand, you make a disengenuous claim to not have reviewed your long time mentors' PACE study, the most egregious example of X in our time, while at the same time characterizing ME patients as Y"
     
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  2. Bob

    Bob

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    Actually, he has said that outcome switching is unacceptable and that this applies to PACE as it would to any study. Personally, I don't think there's much point in trying to embarrass him at a public meeting, as James Coyne made a very good public attempt at that, online, over a prolonged period. He'll just brush the question aside if he's not interested in it. Calling him 'disingenuous' could ruin the atmosphere of the meeting. Perhaps just ask him a genuine question about the PACE trial (i.e. "what are your thoughts about the PACE trial") if you specifically want to ask about it. I think it would be more productive to have a constructive interaction so he doesn't get annoyed or defensive. It might be nice for him to see a friendly ME patient, in person. Just my thoughts, in case helpful.
     
    Last edited: May 13, 2016
  3. user9876

    user9876 Senior Member

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    I would ask how patents who notice issues with trials should raise the problems when large parts of the medical profession seem to not want to listen and the trial PIs are in a powerful position to lobby others.
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Bob Thanks, good points - my intent is to raise awareness of the plight of ME patients in Canada - in questioning Goldacre I hope to raise awareness of ME in Canada for the folks in the room, so perhaps my question needs to have that connection.

    Perhaps something like: "The PACE trial outcome switching fiasco in the UK has done incalcuble harm to UK patients, and has negatively impacted Canadian ME patients too, as well-intentioned doctors, in spite of much evidence, are still prescribing contraindicated treatment, causing harm to patients. What can Canadian ME patients do to stop the harm and disrupt the status quo that has resulted from outcome switching?"
     
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  5. Chrisb

    Chrisb Senior Member

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    I recommend discussing the question openly here. And then asking something completely different. We now know the extent to which these threads are observed.
     
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  6. Old Bones

    Old Bones Senior Member

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    @ScottTriGuy I like it! Perhaps just a few words of explanation for those unfamiliar with PACE and ME. Something like: "ME is an acquired, chronic, systemic physiological illness. The PACE trial recommended Graded Exercise Therapy as one of two effective interventions. This recommendation, based on outcome switching, has done . . ."
     
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  7. Bob

    Bob

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    That looks great to me, Scott. It's an open question inviting constructive engagement :thumbsup:
     
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  8. BurnA

    BurnA Senior Member

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    @Bob i think you are far too polite :) but perhaps very sensible

    I would love to see him try to squirm his way out of a question which he should be embarrassed about.
    How about asking him to clarify this tweet and who exactly is preventing discussion ? Tell him you will find hundreds of patients (and non patients if he wants) to engage in discussion if he is willing.

    @ScottTriGuy will you be able to get someone to video you ?

    At this stage they are probably frantically searching the internet for your photo and will have face recognition restrictions on the way in.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    I would suggest asking a question that is not at all pointed or confrontational. It won't get an answer.

    I suspect that BG is not a people person kind of guy so what happens to patients isn't so much his thing as rooting out bad science.
    PACE is bad science but BG has shown that it's problematic for him to address directly--maybe some of us would be braver who knows.

    How about: What if there is some research that is clearly bad science and it becomes entrenched as the status quo so that health policy is based on it.
    The science harms patients--what steps would you take to remedy this problem?

    He'll know what you're talking about--even if not sure PACE will probably come to mind.

    If it was me and I had--you know--boundless energy ;) I might check his tweet history to refresh myself on what he has actually said on the topic.

    Edit to add: The talk may be enlightening in other ways. I'd be interested to know if for example Eric Hoskins would be there (for those outside Ontario he is the Member of Provincial Parliament Minister of Health--and a real douche--pardon me for saying)

    It would be good to know how 'evidence' based medicine is being perceived because as we know evidence is only as good as the research and politics can trump what the research really says.

    To me that's the big issue. Because after PACE there is still money out there being spent to validate the unvalidable (is that even a word?) So how does one ensure that politics stays out of science? Otherwise our politicians will cherry pick the 'evidence' they like.
     
    Last edited: May 13, 2016
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  10. Large Donner

    Large Donner Senior Member

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    Put it to him that as he is acknowledged as such an avid opponent of Bad science would he like to use the PACE study as a perfect example of such as it would perhaps make the breakthrough that would finally get journalists to understand just how bad bad science is.

    Ask him if he would like to add his signature to the academics letter to the Lancet on the PACE study.
     
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  11. BurnA

    BurnA Senior Member

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    This is a good idea because you could lead with the informative statement...over 30 senior academics or medical experts have recently called on the Lancet to allow an Independant review of a scientific paper, due to it being based on bad science and fulfilling many if not all of the criteria you use to determine if a trial is evidentially sound, is there any reason you have not involved yourself in this case which is getting worldwide attention or did it somehow manage to slip under your radar ( snigger )

    Or maybe: Do you believe personal friendships are more important than exposing bad science which has harmed the lives of millions ? Eh Ben .. .speak up I can't hear you.
     
  12. barbc56

    barbc56 Senior Member

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    What is our goal? To make Goldacre look bad and possibly putting us one step closer to the perception that we are being "vexatious" or make a point that is one step closer to helping our cause?

    Confrontation won't embarrass him, he's been in a lot of tricky situations, but it could possibly make him even more dismissive or defensive. It didn't work with Coyne. Loaded words might have the same effect.

    IMHO, we have every rght to question him about this. But what is the best way to handle this without everyone leaving with egg on their face. It's kind of a catch 22 all around.

    So how can we use a q&a venue, not to be mistaken with t&a, where there is little time to make a point?

    @Jenny TipsforME made some good points about framing in the following blog.

    http://forums.phoenixrising.me/inde...s-persuasion-and-reframing-me-awareness.1956/

    What @Bob and @Snowdrop said.

    I don't have any answers only questions at this point. There are probably many approaches that are valid and vary according to each situation. The kicker is finding the most effective balance, which is easier said than done.

    What I would hate to see*, is slamming what he says, earning high fives all around from our camp with the musical theme of Rocky playing in the background and testosterone oozing from each and everyone's pores. That might feel very good, but does it really help in the longrun?

    In theory, even if you disagree with other issues, I think most of us would agree more than disagree with his take on studies. I find it very puzzling that he doesn't answer these questions but he's in an awkard situation. Actually hes put himself in an awkward situation, so that's on him. There are no simple solutions if one is even available.

    I really don't have a fu**ing clue what the answer(s) are but maybe in the process of asking these questions, some will become more apparent.

    @ScottTriGuy Good luck and give us an update.

    *theoretically:D

    ETA I think it's better to leave out mentioning the BS site as he has distanced himself more and more, because of his other commitments In the coming months there may be a complete break with the forum taking on a new name. Bets are being taken as to when this will happen.
     
    Last edited: May 13, 2016
  13. Sean

    Sean Senior Member

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  14. barbc56

    barbc56 Senior Member

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    I'm not sure this is a contridiction.

    My takeaway was that at first the Annal journal tried to subvert this process but eventually came around. But this may be what your saying.

    It doesn't necessarily mean he thinks that PACE is a good study but simply that he has unfortunately choosen not to speak about it. This is the issue.

    But I'm only speculating since he hasn't been forthcoming about this. Catch 22.

    I wish he would speak out. The fact that he hasn't doesn't necessarily mean that he doesn't care about me/cfs but that his priorities lie elsewhere.

    When we are in the mist of this DD, it's easy to forget that there are other health conditions out there that are also rightfully calling for more funding and that others may have different priorities than we do. It's not always a diss on us, (even though there has been way too much) and it sucks for us, it's the reality of the world.

    As far as his motivations for not speaking up, we simply don't know. It could be because of his association with Wessely but it might not. I think a case could be made that silence is condoning something that's ethically objectionable. It's certainly suspicious, strongly suspicious, but we don't know the inner workings of his mind.

    My opinion is he should speak out. It's a disappointment that he hasn't and that brings him down a notch. I'm not giving him a pass by any means but there may be all sorts of reasons he's not. But the fact that he hasn't, he shouldn't be surprised that with that choice one consequences may be speculation.

    I think I'm repeating myself but am too tired to edit. I will reiterate tomorrow if this isn't clear.
     
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  15. BurnA

    BurnA Senior Member

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    @ScottTriGuy I think the goal should be to ask the most pertinent question and not worry about poor Ben.

    Imagine getting the opportunity to ask a question - is the goal just to get a reply or is the goal to know that you asked the question that needed to be asked.
    I can't stand it when journalists go easy or dance around the awkward questions that they should be asking.

    Will you feel more satisfied when you go home, just cause you got some sort of bland reply to a bland question or would you feel more satisfied knowing you asked a tough question even if Ben didn't reply in full.

    Afterall, the question you decide to ask will represent you first and foremost so all I am trying to say is you should be happy with whatever question you ask, dont pay too much attention to anything here ( including this post ) and especially dont anticipate whether the question will be well recieved or not, if it's the right question it's the right question.
     
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  16. Mark

    Mark Former CEO

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    I agree with this: one should ask, politely, honestly and matter-of-fact, the most important and most fundamental question that one wants an answer to, and not try to second-guess what kind of reaction that might provoke. Strip out any rhetoric and attitude and just ask what we all want to know. Very roughly, I would think that the question is: given that Goldacre's career seems to be focused on identifying and addressing certain bad scientific practices, why has he refused, for several years, requests for him to examine the PACE study which is a classic examplar of most if not all of these bad practices - and will he now please commit to taking a look at this very important issue?
     
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  17. barbc56

    barbc56 Senior Member

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    @Mark
    I think that's a fair and reasonable way to frame the question. The onus will be on Goldacre. How he responds will be very telling about him.
     
    Last edited: May 15, 2016
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  18. Esther12

    Esther12 Senior Member

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    I was reading something else and found this 2007 quote from Goldacre... right while PACE was going on:

    http://www.badscience.net/2007/11/b...entioning-psychosocial-factors/#comment-17961
     
    Last edited: Dec 22, 2016
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  19. wdb

    wdb Senior Member

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    Interesting, I found this also
    BMJ Column – Beware of mentioning psychosocial factors

    It looks like in 2007 he was quite interested in such things, I can't find anything else by him on the topic since then though. I'd speculate he uncovered the utter train-wreck of research methodology and not wanting to rock the boat with his senior psychiatry colleagues he quietly moved on to other interests.
     
  20. Esther12

    Esther12 Senior Member

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    I think he was probably still a true believer until recently. Impossible to know though.
     
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