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Testing Treatments: Better Research for Better Healthcare - book endorsed by NIHR

Discussion in 'Health News and Research unrelated to ME/CFS' started by Simbindi, Aug 8, 2019.

  1. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I was recently sent a free book from NIHR as a 'thank you' for the past work I had done for them as a patient rep.

    The book is entitled, 'Testing Treatments - Better Research for Better Healthcare' and is authored by Imogen Evans, Hazel Thornton, Iain Chalmers and Paul Glazziou.

    I haven't had chance to read it yet, but a quick glance through I realised this may be an interesting read for members on this site amd possibly a good source of quotes when writing articles, blogs or complaints (for example, about the biased journalism around PACE and M.E. treatments).

    It is aimed at and written for members of the public. The foreward was written by Ben Goldacre. It has been endorsed by the NHS National Institute of Health Research in that it has been sent out to their patient representatives.

    As an example of its approach, on page 166 one of the 'recomendations for a better future' is:

    I looked it up online and there is a dedicated website by the authors. The book is available for free download as a PDF and also as an audiobook.

    It can be found here:

    https://en.testingtreatments.org/book/

    As I have said, I haven't read the whole book yet so if other members think it would be of interest to specific members (e.g. those on the NICE group or other advocates) please feel free to tag them and take this tread wherever you wish!
     
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  2. Simbindi

    Simbindi Senior Member (Voting Rights)

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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Are you aware that Paul Glasziou was a co-author of the stillborn Individualised Patient Data version of the Larun review of exercise therapy for ME? And that Iain Chalmers considered that any suggestion that there might be a conflict of interest in White and Sharpe co-authoring as well was malicious?

    In other words these might appear from the ministry of doublespeak.
     
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  4. Simbindi

    Simbindi Senior Member (Voting Rights)

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    But it may still be useful to quote their words back to them as a public record, even if only to highlight and make their hypocrisy evident.
     
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  5. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I no longer work with the NIHR as it became evident to me that much (if not all) of the 'patient involvement' was a tick-box and somewhat patronising exercise.
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am not sure it is worth the time to be honest. I don't think they would understand the points made. I have had a quick look at the text and it is interesting to see how biased the approach is. It is all very anti-active intervention. Unless of course it is harmless things like exercise.
     
  7. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I was thinking more for creating a public record for members of the public and more neutral journalists, rather than changing these individuals' views. I agree that it's a waste of energy trying to engage in critical debate with certain people, especially those who as you have said, are happy to engage in double-speak.
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah but this is completely different because they like those results and are good chums with the authors.

    I assume the ministry of doublespeak is housed in the Eat-your-cake-and-have-it-too building on Rules-for-thee-none-for-me avenue?
     
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  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    If the writers have indeed engaged in double speak of the sort posted then it's beginning to sound like end stage cancer to me with regards to the logical conclusion of the so called 'experts' finally becoming the anti-scientists. (yes, I was thinking of religious imagery as I wrote it with a mixed medical metaphor)

    I wonder if this pamphlet is something Hilda Bastian would be interested in looking at.
     
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  10. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I note the authors use the term 'fair test'. This term was part of the UK National Curriculum in maths and science when I was working in schools 10-15 years ago as a Learning Coach/Learning Support Assistant. It used to really grate on me as it's so unscientific.

    I emailed my daughter (a secondary science teacher) to ask if the term is still being used.

    This was her reply:

    Primary still do because they are shite.

    Should be using 'controlled experiment'!!!

    My ultimate biggest peeve - I beat it out of Year 7 asap
     
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  11. Simbindi

    Simbindi Senior Member (Voting Rights)

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    From page 3 of the book:

     
    Last edited: Aug 8, 2019
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    And they go on about conflicts of interest.

    The thing that strikes me most having skimmed through is the patronising tone. As if they invented rigour. Also every chapter has a loaded agenda. If people took their advice I would be dead from my prostate cancer by now.
     
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  13. chrisb

    chrisb Senior Member (Voting Rights)

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    This seems always to have been the preferred language. Here is a quote from Ian Chalmers page on Wikipedia:

    Subsequently, he became founding editor of the James Lind Library, which documents the history and evolution of fair trials of treatments, and helped to establish the James Lind Alliance, a non-profit organization that "aims to identify the most important gaps in knowledge about the effects of treatments"

    They seem to use a mish-mash of quasi-legal concepts in ways wholly inappropriate for science. It's the same with "evidence-based medicine" - what sort of evidence and to what standard of proof? Apparently "fair" trials can still result in miscarriages of justice. Still, it got him a knighthood.
     
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  14. Simbindi

    Simbindi Senior Member (Voting Rights)

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  15. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I can't remember that episode. Can someone direct me to a link?

    Many thanks in advance.
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It was in a personal email reply to me from Chalmers. I mentioned it on the forum some time back but I don't know where.
     
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  17. TiredSam

    TiredSam Moderator Staff Member

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    Ben Goldacre's words have been quoted back to him many times, his hypocrisy (in not calling out his mentor Simon Wessely's defence of the PACE trial) is evident, but unfortunately no-one's interested.

    I'd be interested in your opinion of Gerd Gigerenzer's view (in his book "Risk Savvy") - he argues that prostate cancer screening has no proven mortality reduction, only proven harm, and he holds up Rudy Giuliani (who claims that screening saved him) as being misled for not understanding lead time bias, overdiagnosis bias, and the fact that differences in survival rates don't tell us anything about differences in mortality rates.

    Declaration of interests: I'm a man in his fifties who doesn't like doctors putting their fingers up my arse. Especially when I only went to talk about my headache.
     
    Last edited: Aug 19, 2019
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  18. Simbindi

    Simbindi Senior Member (Voting Rights)

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    I see a paper that is a follow-on of this book/website has been discussed previously on the forum:

    https://www.s4me.info/threads/key-c...atment-claims-and-make-informed-choices.2128/

    In the paper they do seem to at least realise that we have a science curriculum in this country, whereas the book is very patronising and rues the public's lack of scientific understanding (yet ironically expects them to be interested in the methodological details of clinical trials).
     
  19. Simbindi

    Simbindi Senior Member (Voting Rights)

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    This is what the authors of the book argue.
     
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  20. TiredSam

    TiredSam Moderator Staff Member

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    @alex3619 - I seem to remember you have an interest in Gigerenzer?
     

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