The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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PACE trial: QMUL appeal information re hearing on 20 - 22 April (UK)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Apr 14, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    Thanks to Valerie Eliot Smith for putting together this When - What - Where information:

    https://valerieeliotsmith.com/2016/...-on-release-of-pace-trial-data-20-april-2016/

    QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016
    APRIL 14, 2016


    When

    On 20 April, the First-Tier Tribunal (Information Rights) (page 6 of link) will hear Queen Mary University of London (QMUL)’s appeal against the Information Commissioner’s recent decisionregarding the release of data from the controversial PACE trial.

    What

    Full details of the history and substance of this case can be found in my earlier post Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE trial data. If you would like to learn more about how the process works, you can do so hereFOIA: a Briefing Note + how many PACE requests?

    Where

    The hearing will take place in central London at the Residential Property Tribunal, Court H, 10 Alfred Place, London WC1E 7LR (just off Tottenham Court Road).

    The hearing

    It is listed to last for three days. This is because QMUL (with the benefit of full legal representation) has requested a full hearing with witnesses to give live evidence, as is their right. The alternative shorter process is where the Tribunal considers the evidence on the papers alone and makes a decision from that without hearing from witnesses. This suggests that QMUL is taking this case very seriously.

    Hearings are generally open to the public, unless the Tribunal is considering “closed material” (often the core subject matter of the case) at which point the court room will be cleared. That may or may not happen in this case.

    However, it is important to remember that, as is the case with all legal proceedings, changes can – and do – frequently happen right up to the last minute.

    The parties

    The parties to this case are:

    • QMUL – the Appellant
    • The Information Commissioner – First Respondent
    • Alem Matthees – Second Respondent. Mr Matthees (the original requestor of the data) requested that he be joined as a respondent to the proceedings, as is his right.
    Any parties to the case who are unable to attend the hearing but wish to take part can request participation a live videolink.

    The Judgment

    The usual procedure is that the Tribunal hears the evidence and legal argument and then comes to a decision afterwards. The Tribunal consists of three people – a judge as the legally-qualified chair plus two lay members.

    Judgment is not normally given at the time of the hearing as the Tribunal members have to discuss their conclusion. The judge will then write up the judgment which is generally served on the parties within three to four weeks from the conclusion of the hearing.

    Appeal

    Any of the parties can appeal to the Upper Tribunal so the process is not necessarily over yet. The right to appeal is not automatic at this stage but is on a point of law only.

    If any of the parties are appealing, notice must be served within a working month from the date when judgment is served on the parties.

    Judgments are public documents and are made available via the Tribunals website.
     
  2. alex3619

    alex3619 Senior Member

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    Lets see, I presume Alem Matthees is a patient with ME?

    ME patients get exhausted fast.

    Is it an ethical or moral legal tactic to harm an ME patient by extending the hearing as long as possible? It might be legal, but that does not make it right.
     
  3. actup

    actup Senior Member

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  4. A.B.

    A.B. Senior Member

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    So what will the QMUL witnesses say? What could they even say? Even if the witnesses convince the judge that there is a campaign that just wants to harm PACE authors because patients are unwilling to accept they have a psychogenic illness, what does this have to do with the case? They won't have any evidence that Mr Matthees is requesting data for the purpose of being vexatious, and I can't imagine a judge deciding that Mr Matthees is guilty by association (for being a patient).

    That is one aspect. QMUL have tried to shift their strategy to claim they cannot release data because patients didn't consent to. But the data sharing question is overwhelmingly in favor of sharing of data (not going into all the details here). Is it possible that the witnesses will be trial participants that will say they don't want their data to be released? Again this won't be very convincing. It has already been ruled that the data won't allow identification of patients.

    It's going to be interesting finding out how QMUL will try to win this.
     
  5. Kati

    Kati Patient in training

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    Anybody planning on attending or sending out spies? :ninja::ninja::ninja:
     
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  6. charles shepherd

    charles shepherd Senior Member

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    I will be there on the second day…...
     
  7. Esther12

    Esther12 Senior Member

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    I'm afraid that I can imagine that. Fingers crossed it won't happen this time. It does seem like there are now more and more authority figures joining patients in criticising PACE.
     
  8. Esther12

    Esther12 Senior Member

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    If this is a court. does anyone know if there will be transcripts publicly available? I'd love to see what arguments QMUL use.
     
  9. Sasha

    Sasha Fine, thank you

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    Interesting question - why not post on Valerie Eliot Smith's blog? She might know.
     
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  10. Esther12

    Esther12 Senior Member

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    Outside of PR, the internet scares me!
     
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  11. user9876

    user9876 Senior Member

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    moderated with many others

    And do they have to swear to tell the truth and the whole truth (so admit their treatments don't work in the long term!).
     
  12. Sasha

    Sasha Fine, thank you

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    Same here! I much prefer just to stay here, in my cave. :nervous:
     
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  13. mango

    mango Senior Member

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    Will you be there simply to listen and observe, or something else/more..?
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    Bribes? I can't think how they could win any other way.

    Their argument that anyone would care about the questionnaire summary scores, or 6 minute distance walking distance of any individual is just laughable. This data has no value alone - it only has value when analysed on a group by group basis. They consistently refuse to publish the data in a reasonable way (which ironically was how the published protocol said it should be published), therefore FOI requests like this are a final way to either release the data so that others can do the analysis - or to encourage the authors to stop hiding and publish the summary statistics as specified in the protocol.
    Hopefully the tribunal will favor common sense, release this data to end this saga, so that everyone can finally move on.
     
    Last edited: Apr 15, 2016
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  15. Kati

    Kati Patient in training

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    It is quite possible that their angle will be the promise they made to patients to not share their data and protect their privacy.
     
  16. sarah darwins

    sarah darwins I told you I was ill

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  17. Luther Blissett

    Luther Blissett

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    Don't think there will be transcripts, but there will be a summary presenting the arguments and the reasons for the decision.

    I'm quite confident that our side has a good chance of winning, the law seems to be in favour of the data not being found to be personal, and the Information Commissioner should be able to tell the difference, and that's why he granted the request.

    Edited for spelling
     
    Last edited: Apr 15, 2016
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  18. Kati

    Kati Patient in training

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    Sounds good but it's not over till it's over. I can't underestimate the power of the psych lobby.
     
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  19. Skippa

    Skippa Anti-BS

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    Don't get your hopes up, could be very disappointing if we get carried away here.

    I wouldn't underestimate the ability of The Establishment to close ranks and whitewash anything.
     
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  20. Yogi

    Yogi Senior Member

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    Great to hear Dr Shepherd. Is anyone else here in the London region who can also make it on day 1 and 3????

    I do fear that the PACE PI's and QMUL could lie a lot in this case and this not be challenged by the ICO or the judges.

    It would be good if any of the other supporting ME charities could also attend to note what is being said.??

    Hopefully Valerie Elliot Smith could attend to report?
     
    Last edited: Apr 18, 2016
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