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PACE trial data

Discussion in 'PsychoSocial ME/CFS Research' started by JohnTheJack, Feb 9, 2018.

  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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  2. Cheshire

    Cheshire Moderator Staff Member

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    Wow, this is completely unbelievable. If true, this reflects very poorly on QMUL admistrative capacities and their sense of responsability concerning the trials held under their governance.

    Edit: thanks a lot John, for all the efforts you're putting in to get the data.
     
    Last edited: Feb 9, 2018
  3. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    They are either lying or incompetent. (Or both.)
     
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  4. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    As rubbish excuses go this one is the University equivalent to the dog ate my homework. Or I left it on the train and they can't find it in lost property.
    They really think everyone else is stupid, don't they?
    They managed to find the data they needed quickly enough to re-analyse according to the original protocols when it was about to be released to Alem Matthees, didn't they?

    Keep on keeping on @JohnTheJack they'll have to give up eventually and at the moment it seems they're hoping they can hold out longer than you.
     
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  5. guest001

    guest001 Guest

    Gosh... really buried deeply isn't it? :emoji_fox:

    Edit: sarcasm
     
  6. Valentijn

    Valentijn Not a moderator

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    If QMUL isn't willing or able to maintain trial data, they should not be allowing their staff to conduct research as part of their university.
     
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  7. large donner

    large donner Guest

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    Lets hope they never have anyone there who discovers the cure for cancer and then retires.
     
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  8. guest001

    guest001 Guest

    :yuck::rofl:
     
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I thought the reason why the BBC didn't follow up on doing a programme on PACE recently was because the MRC said they had had the data independently analysed and that there was nothing wrong.

    So someone must have access to it(?)

    eta: might have been the SMC(?)
     
    Last edited: Feb 10, 2018
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  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    If QMUL are now saying they can no !onger access the data, and they stick to that, could we go after them by any other means?

    I'm thinking along the lines of:
    1) is there some sort of charter / standards they have to uphold? Given that patients have been generous with their time, suffering and data, does the university have any obligation to them to maintain access to the data?

    2) This was a publicly funded trial so surely they must be accountable to some public body - 5 million quid and now the data can't be accessed?

    Who actually owns the data?
     
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  11. James

    James Established Member (Voting Rights)

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    Could they just box up the raw data that no staff employed at QMUL can read and must be taking up space in a spring cleaning exercise for the university o_O
     
  12. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    So, reading between the lines, it appears QMUL delayed providing an answer until everyone associated with the trial was gone.
     
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Even if everyone is gone either:

    The university owns the data and therefore has some responsibility for it.
    Or
    The researchers own the data and thats who we should be chasing.
    Or
    The data, paid for out of public funds, has been passed back to the DWP

    In any case the university should at the very least be able to tell us where it is and who we need to talk to. If they don't have proper provision on place for data management and handling then that in jtself should be an issue.

    Of course that's just my idea of the way the world should work...which probably means it probably doesnt.:rolleyes:
     
    Last edited: Feb 9, 2018
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  14. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    Yes, I completely agree, @Invisible Woman. I wasn't excusing them, rather feeling that they gamed the system.
     
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    The tactical retirement seems to have become something of a theme in public life, though usually in connection with pension considerations.
     
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I understand @Indigophoton .

    I rather suspect they are gaming us, but I would so love to see it backfire. It would be good to use their own devious games to undermine their situation/reputation.

    I don't understand how these things work, but it seems astonishing that the establishment responsible be able to weasel their way out of taking responsibility for £5 million worth of data.
     
  17. Andy

    Andy Committee Member & Outreach

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    Is there anything stopping us looking for an appropriately trained data analyst (or whatever the right description is)?

    Edit: Spelling is still hard for me..
     
    Last edited: Feb 9, 2018
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  18. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    I suspect they'd cite confidentiality/anonymity concerns, but it'd be worth finding out if it's an option.
     
  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    Worth remembering that QMUL have attempted to portray criticism of their responses to FOI requests, and ICO judgement, as evidence of how untrustworthy and unreasonable we all are.

    So... QMUL spending years fighting against the release of trial data, and then after losing a tribunal judgement seeing everyone connected to the trial leave the organisation and claiming that this means no further data can be released... this sounds okay-ish... but maybe there are some problems with it as a way of managing data from a trial which has become an international scandal?
     
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "lost the means to locate and extract it because this requires specialist knowledge"
    "
    Research at Queen Mary
    Our academics undertake world-leading research in a lively and supportive research community. The results are original, informative, often surprising or questioning, and always significant – achieving impact on wider society and within specialist areas of knowledge.

    We are 14th in the UK and 121st in the world
    8 Nobel Prize winning staff and alumni
    £137m – annual research income"

    hmmmmm
     
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