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PACE trial TSC and TMG minutes ordered released

Discussion in 'PsychoSocial ME/CFS Research' started by JohnTheJack, Feb 21, 2018.

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  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Just received decision in the post. Not read it all but ICO has ordered release of TSC and TMG minutes.
     
    JohnTheJack, Feb 21, 2018
    #1
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  2. Adrian

    Adrian Administrator Staff Member

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    I think that is great. I think there are serious questions about the approval of the outcome switching and what was given as reasons to the committees.
     
    Adrian, Feb 21, 2018
    #2
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  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Well done! Why those committees didn't seem to exercise appropriate oversight has always been a big question.
     
    Sasha, Feb 21, 2018
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  4. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Excellent....is that trial steering committee and management? committee.
     
    Daisymay, Feb 21, 2018
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  5. guest001

    guest001 Guest

    Excellent! Another bad day for the psyches. :D
     
    guest001, Feb 21, 2018
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  6. Nellie

    Nellie Senior Member (Voting Rights)

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    TSC and TMG What do they stand for?
     
    Nellie, Feb 21, 2018
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Trial Steering Committee and Trial Management Group.
     
    Sasha, Feb 21, 2018
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  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Yes.
     
    JohnTheJack, Feb 21, 2018
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  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Invisible Woman, Feb 21, 2018
    #9
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  10. Trish

    Trish Moderator Staff Member

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    Well done, @JohnTheJack. Is there a timescale for when they have to be released, and can they appeal against the ICO decision?
     
    Trish, Feb 21, 2018
    #10
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  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks. It relied heavily on data released by Alem so it's very much his work as well.

    35 calendar days to release. They can appeal, but decision suggests there have been negotiations between QMUL and ICO on what can be redacted, and my impression is that this time they won't appeal.
     
    JohnTheJack, Feb 21, 2018
    #11
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  12. Sean

    Sean Senior Member (Voting Rights)

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    :thumbup:

    Be interesting to see what they redact.
     
    Sean, Feb 21, 2018
    #12
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  13. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Two possible scenarios of the kind of things that might be redacted:

    "Look guys, I'm sorry to tell you it's looking as if the results will be shit unless we change this, drop that, tweak this and ignore that, and bring in statisticians expert in fiddling results. So hands up all those in agreement with allowing us to carry out these changes?....Great, thanks lads for the unanimous vote. See you at the health insurance industry's annual bash next week in the Seychelles."

    or

    " Yes I know Mrs Boniface, this isn't the sort of thing you have expertise in as chairperson of the Oxfordshire WVS, yes it is all very complicated and the statistics are hard to grasp I know, but I can assure you that all the changes we are proposing are perfectly legitimate and in accord with the very highest level of research practice, all you have to do is trust us, you know we're psychiatrists of the highest integrity with the patients best interests at heart."
     
    Daisymay, Feb 21, 2018
    #13
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  14. chrisb

    chrisb Senior Member (Voting Rights)

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    One wonders at what stage someone thinks it worth applying for "whistleblower" status. It would surely be in the public interest.
     
    chrisb, Feb 21, 2018
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  15. Trish

    Trish Moderator Staff Member

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    'Minutes' vary enormously.

    Some I've seen detail every point raised in a discussion, with the speakers named.

    Others simply list decisions reached and who is to action them without giving any clue about who said what and whether anyone dissented.

    Some are very formal, with motions proposed and seconded and votes cast with numbers recorded.

    Let's hope it's the first of these, though if it is, it will be heavily redacted.
     
    Trish, Feb 21, 2018
    #15
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  16. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Well we could play guess the redaction for some sport. A bit like on "have I got news for You" where they guess the headlines

    [​IMG]
     
    arewenearlythereyet, Feb 21, 2018
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  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Yep
    we could project selective quotes onto buildings for Millions Missing.....
     
    Amw66, Feb 21, 2018
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Amazing work.

    I'd just been discussing making a request for those, but had been dreading the amount of work I thoght it would be. It will be very interesting to just read the ICO report, and see how QMUL tried to argue against release.

    Thank you so much for this.
     
    Esther12, Feb 21, 2018
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  19. Louie41

    Louie41 Senior Member (Voting Rights)

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    What is the ICO? What is the significance of this for members who don't know the legal setup in the UK?
     
    Louie41, Feb 21, 2018
    #19
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  20. Sasha

    Sasha Senior Member (Voting Rights)

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    The ICO is the Information Commissioner's Office: "The UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals."

    QMUL must either now comply with the ICO's ruling or go to court to fight it, I think.
     
    Sasha, Feb 21, 2018
    #20
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