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NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

Discussion in 'Other health news and research' started by Sly Saint, Sep 1, 2021.

  1. chrisb

    chrisb Senior Member (Voting Rights)

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    It was a shocking revelation, via Freedom of Information, that a person who is on first name terms with you and also acknowledged to be connected with the Royal College of Psychiatrists, put pressure on you to alter the NICE review evidence reports after recommendations based on those reports had been agreed and signed off by the Guideline Development Committee [9]

    It was worse than that. It had also been signed off by the Executive Committee, and would therefore have required GL to overrule herself.
     
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  2. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Good point. I should have put that in...
     
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  3. Barry

    Barry Senior Member (Voting Rights)

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    Moved post

    This does raise a very important point: How can it be legitimate for organisations having so much influence on public health, to be so protected from public scrutiny? Why should any organisation be protected from FOI scrutiny if it clearly has a significant role influencing public health systems? Is it a problem with the scope allowed for FOI requests? Or a problem with what sort of organisations can be registered as charities? Both? ... and more? For me I have to say it seems ludicrous that an organisation such as Cochrane can be deemed a charity. How can it be that any organisation having such influence can be unregulated? It's bonkers.
     
    Last edited by a moderator: Jan 1, 2022
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    should they even be allowed to do it? Is it within their powers. What authority is there for the, to delegate or share powers? I know nothing about the particular legislation, but surely Parliament gave the powers to NICE, not to Cochrane, or NICE+Cochyane.
     
    Last edited: Jan 1, 2022
  5. Barry

    Barry Senior Member (Voting Rights)

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    Last edited: Dec 31, 2021
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  6. dave30th

    dave30th Senior Member (Voting Rights)

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    Oxford NHS foundation trust also produced the covid recovery advice based on CBT/GET that they then took down.
     
  7. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Absolutely! There was a campaign to make charities subject to FOI. I am not sure why it never got anywhere. I looked into it a while ago because I (obviously) wanted to FOI Cochrane. More recently, for example, I wanted to know why they changed their review withdrawal policy (in 2019, just after I had met with the Editor in Chief to beg her to withdraw the Exercise review) which now allows reviews to stay on the Cochrane Library forever, even if they are misleading and/or out of date. The definition of a "serious error" in a review does not include manipulation of GRADE to flatter an intervention favoured by the review authors, or a review being 13 years out of date with no prospect of it being updated.
     
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    If Cochrane are seeking to become formally involved in matters of public policy these matters need to be scrutinised by MP's. Perhaps the matter should be put to Jeremy Hunt via friendly MPs.

    It is perhaps fortunate that Sarah Wollaston is no longer chair of the select committee. She might have had to recuse herself in view of the family relationships.
     
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  9. Midnattsol

    Midnattsol Moderator Staff Member

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    Hutan, Peter Trewhitt, Ash and 2 others like this.
  10. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Anecdote alert. I spoke to a friend recently who said the daughter of a friend of hers has had Long Covid for months. She was seen at a Long Covid clinic based at the Churchill hospital recently...I think this LC clinic focusses on issues with the heart (or maybe lungs). The recommended treatment for her was 5 minutes of exercise per day for a week, and then 5.5 mins exercise per day for a week etc. I will try and find out more details.
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    So that's making breakfast sorted, what do they suggest she do for making lunch and dinner lol
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Surely if NICE and Cochrane are going to be partners, then given that one of those partners is already a public body liable to FOI requests, then there should be some mechanism by which the other partner "inherits" the same public body liabilities. Otherwise public bodies could get around their own legal responsibilities by simply farming out some of their activities to non-public bodies. Either way, once there is that sort of relationship, the liabilities of both should default to be the same as those for the public body.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Charities and the Freedom of Information Act
    Date posted: 06/02/2020
    https://www.russell-cooke.co.uk/insight/briefings/2020/charities-and-the-freedom-of-information-act/

    It would appear that if they (Cochrane) now have a formal agreement with NICE then they no longer will be able to use their 'charity' status to be totally exempt from foi s .
     
  14. CRG

    CRG Senior Member (Voting Rights)

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    Unless there is some exclusion such as "commercial interest" then the dealings between a public body and a non public partner are subject to FOIA via the public body, this would apply to all areas that are covered by any formal agreement between the two entities. Of course contacts outside the formal agreement and outside the public body's usual resources (email etc) would not be covered, but that is true of such contacts between two public bodies.
     
  15. Barry

    Barry Senior Member (Voting Rights)

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    Excellent!
     
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  16. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    @CRG has pointed out that a public body retains its statutory duties. Therefore, on the face of it, NICE can engage in whatever "relationships" it sees fit to i.e. regarding the delivery of its statutory duties - preparation of guidelines.
    The problem re NICEs relationship with Cochrane is that it not coherent policy given:
    • Cochrane's use of GRADE and the fact that GRADE accepts/validates unblinded studies with subjective outcome criteria - so as @strategist has pointed out, even homeopathy would be shown to be effective;
    • NICEs responsibility to prepare evidence based guidelines and maintaining public confidence in the exercise of its functions - so Cochrane relationship is incompatible. Also, the behaviour of certain leading figures in Cochrane, like Paul Garner (praising leading figures in the lightning process) is not compatible with NICEs responsibility to maintaining public confidence in the system of producing guidelines.
    The way to tackle this is exemplified by the submissions made by @Caroline Struthers That highlights the issues of using Cochrane/GRADE and the fact that the relationship is not appropriate given the fact that it undermines the credibility of NICE.

    Discussion of FOI requests has been moved to the members only area on this thread.
     
    Last edited by a moderator: Jan 7, 2022
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  17. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    In their response to me NICE stated that the evaluate all reviews i.e. they do not use Cochrane reviews without reviewing them. If true then what use is the link to Cochrane i.e. if NICE has to carry out their own evaluation?
    EDIT - I've posted an extract from NICEs email to me below.

    Yes as a "management approach", and assuming that management neither know nor care (to be fair I've experienced that), then it makes "sense"! Bear in mind @strategist comments that with suitably subjective outcome criteria even homeopathy can be shown to work and GRADE/Cochrane looks like vehicle to prove it ---- unblinded studies with subjective outcome criteria are considered moderate quality evidence!

    As per @Caroline Struthers ----:banghead::banghead::banghead:-----
     
    Last edited: Jan 5, 2022
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  18. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Here's an extract from a response I received from NICE*. Assuming these statements, from NICE, are accurate (I copied my responses to the ME/CFS APPG & Covid APPG - so they had better be!) then NICE independently assesses the evidence. If so then where is the saving?

    *NICE to me:
    "Each review question in the NICE guideline has its own review protocol agreed by the guideline committee. These protocols are different to those used by Cochrane reviews (for example, different inclusion and exclusion criteria), and the NICE guideline conducted its own independent systematic reviews based on Developing NICE guidelines: the manual<https://www.nice.org.uk/process/pmg20/chapter/introduction>.

    In terms of quality assessment of the evidence, the NICE guideline committee exercised their clinical judgement to decide which components of GRADE were important for downgrading evidence quality, for example, risk of bias, population directness, and threshold(s) for minimal clinically important differences. The full details of the review protocol and data analysis relating to exercise therapy in NG206 can be found in Evidence review [G] for the non-pharmacological management of ME/CFS<https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028>. The clinical evidence summary tables for exercise interventions, including GRADE analysis, begin on p.147.

    These differences between the methods and processes of Cochrane reviews and NICE guidelines can result in different quality ratings of the evidence in GRADE, as in this case with exercise therapy for ME/CFS.
    "
     
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  19. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    I thought Robert West was being ironic but then I clicked on the link to Twitter and realised he wasn't ---- how indeed could we do without Cochrane ---- if only!
    And as for the "Cochrane Tobacco Addiction Group's work" well if they're all smoking there may be some hope!
     
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    We all rely on the Cochrane Tobacco Addiction Group's work.

    This has to be dog-whistling to someone. Why should anyone need a Tobacco Addiction Group?
    Tobacco should obviously not be sold for profit. The problem is simply a political one.
     
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