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NICE Annual Conference 2019: "Transforming care"

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Jan 20, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    http://www.niceconference.org.uk/about

    "challenging views", is that code for "completely wrong views"? Or perhaps "views that he has no actual proof for"?

    Anyway, full agenda here, http://www.niceconference.org.uk/agenda
     
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  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Looks interesting.....
     
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Looks terrible. Simon Wessely in conversation with Esther Crawley's subordinate Phil Hammond? I can only imagine the splurge of manipulative propaganda the audience will get to enjoy. I think NICE is a pretty broken institution.
     
  4. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    This bit could be interesting (from http://www.niceconference.org.uk/agenda):
     
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  5. obeat

    obeat Senior Member (Voting Rights)

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    Any point sending Phil the evidence that patients dont benefit from GET?i.e.the patient surveys?
     
    Last edited: Jan 20, 2019
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  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Wonder if @dave30th fancies a visit to Manchester. It is also pretty close to ME Awareness Day..
    Or maybe @Brian Hughes would have some interesting questions to ask.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    • Randomised trials have been the gold standard for evidence of effectiveness, but increasing numbers of patients with multiple conditions and the growing sophistication of real-world data offer new perspectives on how to decide what works and for whom.
    That sentence is incoherent, and even if it was coherent it is unclear what it is might be supposed to mean.

    Who is Phil Hammond? I get the impression he is someone out of his depth.
     
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Not really, he’s been told by patients before and is of the BPS management approach and works with children.
    I think he is a "celebrity" Dr, possibly GP/ comedian / (former?) radio presenter. He was, I think, sacked from his bbc radio program for something about brexit, possibly not neutral enough. I think that hes written popular books but that might be wrong. He works/worked at the same place as Dr Esther Crawley “treating” children. He interviewed Esther a few years ago where she defended the PACE trial and said kids and parents don’t want medical treatment forCFS or something similar.
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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  10. obeat

    obeat Senior Member (Voting Rights)

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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    When did the "gold standard" change from double-blinded placebo-controlled randomized trials to just randomized trials? It seems the gold standard has become diluted over time. I'm seeing far too much of this loosening of standards lately, seemingly to make it easier for the psychologisation of medicine.

    It seems to go hand-in-hand with evidence-based medicine, favoring finding positive outcomes without paying much attention to falsification and contradicting evidence. Magical thinking is creeping in with a vengeance. Does not bode well.
     
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  12. TiredSam

    TiredSam Moderator Staff Member

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    I think it might mean that it's time to stop trusting science-fascist experts and start listening to anecdotal evidence from real-world patients. This is not only more respectful to patients' narratives and perspectives and more democratic, it also has the advantage that even if you can't design a questionnaire to get patients to tell you what you want to hear, you can always spin their anecdotes into whatever result you want anyway.

    A clue is in the phrase "real-world". Whenever I hear someone say "In the real world ..." it's always a sign that they're going to get onto their subjective hobbyhorse about something.
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

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    He works in E Crawleys CFS clinic
     
  14. Sean

    Sean Senior Member (Voting Rights)

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    Yeah, I noticed that too.
     
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  15. Adrian

    Adrian Administrator Staff Member

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    I assume he is referring to big data approaches applied to data we routinely collect rather than running trials. We do collect a lot of data and some of it is contained in a structured form in databases which makes it useful and other pieces can be scraped and structured. This gives us the ability to reason about things like medical records in a way that perhaps wasn't practical in the past.

    However, with all these things you need to worry about the quality of the data and that you can get self-fulfilling loops. So for example, if there is a high misdiagnosis rate for ME then the medical records from GPs (and things like insurance cost codes) may not be reflective of the actual disease. If this data is used to decide on treatments then the inaccuracies can become self-reinforcing and maybe stop anyone asking the question - do they really work. Again with ME if a GP suggests CBT a patient has this and gives up then the GP concludes success - a big data approach would learn this result even though it was just that the patient gave up on the doctor (thats not recorded).

    So in some areas the data collected may be useful but probably only where diseases are well characterised and understood (hence ensuring good quality data). But for many of the areas and particularly things like ME then the data is poor and conclusions will be poor.

    I think we discussed a lot of this with a paper analyzing insurance cost codes.
     
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  16. ladycatlover

    ladycatlover Moderator Staff Member

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    I mixed Hammond up with Goldacre (brain fog), so we just had a nice blast of Fox. :rofl:

    It's a very expensive thing to attend as a patient - £150! :eek: I just feel that's more than I can afford to pay (even assuming my Carer gets in free to push my wheelchair).
     
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  17. Tilly

    Tilly Senior Member (Voting Rights)

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    He works with Crawley and he is a comedian that write for Private Eye... I have a lot to say about that but need more coffee before I start upload_2019-1-28_22-0-50.png
     
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