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ICO ruling: QMUL should release copies of COI statements made to the Trial Management Group

Discussion in 'PsychoSocial ME/CFS News' started by Esther12, Mar 22, 2018.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    Just had this ruling pop up on google: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258454/fs50696884.pdf

    I vaguely remember some controversy about someone (Aylward?) failing to properly declare his COI? I can't remember the details though.

    I think I may have seen someone post a copy of the Aylward COI statement somewhere on social media, in which case these documents may already have been released.

    Once again I thought that the ruling simplified things into a psych vs bio debate in a way that was unhelpful, but they didn't seem to use that to discredit the request for information.

    QMUL had been arguing that the information was already in the public domain (as summaries were included in a PACE paper), but this is not the same as the statements themselves. QMUL then seemed to try to argue that they should not have to release personal info, but the ICO was having none of it:

    I didn't think that the judgement revealed much more info, but others may pick up on something I've missed.
     
    Last edited: Mar 22, 2018
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  2. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    I now have those statements. It was my request.
     
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  3. Trish

    Trish Moderator Staff Member

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  4. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    Yeah, I only received the statements yesterday. I'll upload later today and post a link.
     
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  5. Daisymay

    Daisymay Senior Member (Voting Rights)

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    I think this, point 27, is a relevant bit:

    27. The Commissioner asked the University to provide her with copies of the original COI statements, which it did. There are 19 statements by 19 individuals, each provided on a five page template that appears to have been created by the International Committee of Medical Journal Editors. As such, and although the paragraph in the Lancet report may well accurately summarise the statements, the Commissioner considers that the individual COI statements contain more information than is published in the Lancet report. She therefore finds that the University was wrong when it told the complainant that the information he had requested was already published and accessible to him. All the information the complainant has requested – that is, copies of the COI statements - is not already reasonably accessible to him and therefore the University was incorrect to rely on section 21.

    So QMUL were wrong in saying JtJ could get all the relevant info from the LANCET, there is more info there on these 19 COI statements which the Commissioner thinks should be released into the public domain.
     
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  6. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Excellent, thanks so much for all your dogged work x
     
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  7. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've not really been following the issues around these COI declarations, so my notes might not be worth much - hopefully I won't brashly say something that QMUL can use as evidence of harassment!

    It seems that no statements were provided for the observers (including Aylward). It also seems that some of the centre leaders had statements and some did not (eg Wessely did not). I get the impression that different people filled the forms out in quite different ways.

    Gabrielle Murphy lists "insurance reports" as a potential COI. This isn't mentioned in the COI section of the Lancet PACE paper.

    Sharpe:

    "Aegon plc - providing independent medical advice
    various law firms - providing independent medical advice and reports"
    He also mentioned having costs paid by the American psychiatric association for his involvement with DSM V

    White:

    Department for Work and Pensions - Occasional fees for consultation advice
    Swiss Re (Re-insurance company) - Consultation fees for advice

    [I feel like White has not been entirely clear in public about whether he was paid by the DWP - this is how it was phrased in the Lancet's COI declaration "PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company)."]

    Grants/grants pending:

    Action for M.E.
    - Pilot project for genetic research into CFS
    - Support for national database for CFS

    MRC:
    Research project into ethnic differences in CFS
    Research project into childhood antecedents of CFS

    Linbury Foundation, 1994:
    Research grant for RCT of graded exercise therapy

    Chalder:

    Medico-Legal Reports

    Assessments and Treatment (various)

    Uni Health Bergen

    Expert Opinion Sought

    [Chalder's declaration lists these things as the entities which paid her, so I think she misunderstood the form].

    edit - members of the PACE trial TMG are listed here: http://me-pedia.org/wiki/PACE_Trial_Management_Group
     
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  9. chrisb

    chrisb Senior Member (Voting Rights)

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    This looks odd. There seem to have been honest attempts by some to make proper disclosure. The original refusal by QMUL to hand over information has merely heightened unwarranted suspicions.

    Perhaps it comes down to the dog that didn't bark.

    I have been trying to find Aylwards CV before1992. For a senior academic and former public servant it is surprisingly difficult. Perhaps I am just being dim.
     
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    I just thought of this eg of a OCI statement from Aylward:



    No idea how it was made public, or if more info like this is available.
     
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  11. Adrian

    Adrian Administrator

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    It may just reflect the coming of the internet and the ease of getting new information.

    This goes back to the 70s in terms of papers published
    http://europepmc.org/search?query=AUTH:"Aylward+M"&page=2
    but there can be some naming confusion

    [Added]
    One letter http://europepmc.org/scanned?pageindex=1&articles=PMC1638452 from 76 gives an org of
    Clinical Research Lab
    Cefn Coed
    Merthyr Tydfil, Mid Glamorgan, Wales
     
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  12. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Don't know if this will help? Not a great deal of detail.
     
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    I noticed that MA is probably not above delivering a two fingered salute. He wrote a blog in 2015,Wales picks up the pace. The title bears only a tenuous relationship to the content.

    Thanks Adrian for those links.

    Edited
     
    Last edited: Mar 25, 2018
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  14. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    From link I gave above:

     
  15. Nellie

    Nellie Senior Member (Voting Rights)

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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    I wonder whether we are on the wrong track with MA and non disclosure. We are thinking in terms of his relationship to the DWP. He retired in 2004 and went to his UNUM funded university post. Is that part of the COI statement that should have been disclosed?
     
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  17. Sbag

    Sbag Senior Member (Voting Rights)

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    He was Chair in Psychosocial and Disability Research at Cardiff, where he is also Director of the UNUMProvident Centre for Psychosocial and Disability Research

    I woukd have thought being in a UNUM position was a COI?
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Was that 2004? I forgot that was so long ago. That could have come after the initial COI report, but I'd have thought Aylward should have had to update his COI.

    He and Sharpe contributed to this Unum CMO report in 2002: https://web.archive.org/web/20040823133526/http://www.unum.co.uk/downloads/CMOReport.PDF
     
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  19. chrisb

    chrisb Senior Member (Voting Rights)

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    That document by Hooper which Nellie linked to above gives October 2004 as the date. I will look for corroborative evidence.
     
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  20. Sbag

    Sbag Senior Member (Voting Rights)

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