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PACE trial TSC and TMG minutes ordered released

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

  1. Louie41

    Louie41 Senior Member (Voting Rights)

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    Thank you, @Sasha! I gather that, if they want to fight it, they would go to a tribunal?
     
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    I think so - like when the ICO ordered QMUL to release the PACE data and QMUL appealed.
     
  3. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Well done and thanks so much @JohnTheJack !

    A couple of questions:

    1. Does all this information gathering cost anything in terms of equipment (from stamps to paper to computer stuff) that I (we) can assist in by donating to? (Please don't be a martyr to bearing costs)
    2. Do you have people who can assist in any way? Would it be helpful to have any volunteers?

    Just asking, as it seems to me that while verbal and written appreciation is good, sometimes we an help out too, and give a little mutual aid. I'm also asking because sometimes people feel awkward asking for help (in whatever way), especially asking groups like us.
     
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  4. Alvin

    Alvin Senior Member (Voting Rights)

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    Whats to prevent them redacting heavily?
     
  5. dave30th

    dave30th Senior Member (Voting Rights)

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    Presumably they have 20 or 40 days to appeal to the First-Tier Tribunal, I would assume. But QMUL would have to want to go through the public ridicule again over spending money on this, and that seems unlikely to me.
     
    MEMarge, Louie41, AndyPandy and 15 others like this.
  6. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Yes and it would surely be even harder for them to justify not releasing this info and would look so bad, as it will if it is heavily redacted.
     
  7. Barry

    Barry Senior Member (Voting Rights)

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    A question based on ignorance of how this works. How can we be sure they are not over-selective about what they release? How does the process ensure that some data is not simply ignored? (As compared to data that is redacted, and thereby not ignored).
     
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  8. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    We can't be sure, but to do that runs the risk of anything they hide being revealed later. All it would take would be an anonymous tip off to ruin their concealment. They would have to be 100% sure that anyone with knowledge of the matter would be o.k. with concealment. As people at their own institution are willing to doubt their judgement, this is a big risk. They could even be exposed by people angling to replace them. It wouldn't need someone with a pure motive.

    It would also by necessity have to involve someone lower down the pecking order who would be doing the work of preparing the release in a conspiracy. Maybe people who haven't had quite the same pay rises as the people at the top, and who rely on a steady income. Maybe people who are tired of being treated as the 'get me some coffee' lacky, or being looked at in a certain way. People who don't have as much incentive to break the law. People with pensions on the line, etc. Risky gamble. ;)
     
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  9. Valentijn

    Valentijn Guest

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    It would be a serious ethical violation and probably a legal one as well, to alter or deliberately omit things. Basically the consequences would stop them from doing it, similar to why they won't tell a lie under oath. It would be an end of their careers.
     
    mango, MEMarge, Louie41 and 10 others like this.
  10. Trish

    Trish Moderator Staff Member

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    A question asked out of ignorance:
    Are there rules about what sort of information can be redacted from documents the ICO has ordered to be released?
    And does someone from the ICO check the original against the redacted document to check compliance with such a rule?
     
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  11. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I think info can only be redacted that has an exemption in the rules. (personal info like addresses, phone numbers etc)
     
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  12. large donner

    large donner Guest

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    Maybe the head of the stationary department has retired and they have effectively lost the means to locate and redact the minutes and find a black marker pen.
     
    mango, MEMarge, Louie41 and 12 others like this.
  13. Alvin

    Alvin Senior Member (Voting Rights)

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    That would be serendipitous :)
     
  14. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks for your concern, Luther (hehe).

    1. So far no it hasn't. I have been doing everything online. The PACE data appeal, which I have been working on this week, will need to go through the post, but printing and mailing should be <£10 so manageable. If it starts requiring massive amounts of printing and mailing, I may return and let you all know. I'm hoping it won't be necessary, though.
    2. No. I kind of like working at my own pace and will sometimes sit on something for months doing a bit here and there as th illness permits. When I need specific help, I do shout out, and shall remember to do so.

    I do appreciate and welcome your concern.
     
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  15. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Update.
    I have been reading the thread, but haven't been able to respond for the obvious reason.
    QMUL has 35 calendar days to provide the information (from the date of the decision).
    The other questions about redactions etc are answered in the decision itself, which I have now scanned and uploaded.
    https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO decision minutes.pdf?dl=0
     
    mango, MEMarge, fossil and 21 others like this.
  16. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    Wow, well done at @JohnTheJack in getting a Tribunal decision effectively over-ruled to get this info:trophy@
     
    Last edited: Feb 23, 2018
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  17. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    On the redactions, the decision states,
    Also redacted will be staffing/personal info like details of sick leave, maternity leave etc.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Great that we'll (hopefully) soon be able to look at those minutes. I wonder if they will reveal anything about the changes to the recovery criteria. If they don't, that will be big news in itself. What's not discussed in the minutes may be as interesting as what is.

    Some quick notes on the judgement - was a bit of a roller-coaster to read imo.

    Another reminder to everyone that if ever feeling frustrated and angry about something, before hitting 'post reply' it's worth thinking about whether it could be used by QMUL to try to present PACE critics as unreasonable (QMUL actually focussed on a PR thread where I was by far the most militant so do as I say, not as I do... *grumble* *grumble* I had good reason for being pissed off). They also seemed to be trying to use criticism of the ICO and any Tribunal judgemenets against us... sorry ICOers but sometimes you get things wrong. This time the ICO found that the disparaging comments were not serious enough to affect their judgement, it's always possible that another officer could decide differently:

    "In particular the university provided a link to a discussion on that forum which commented on the Tribunal's decision to uphold the refusal of the earlier request for these minutes. Many of the comments are disparaging of both the judgement and the research itself. The Commissioner considers that although anyone unaccustomed to facing a disgruntled audience is likely to find some of the comments unpleasant, the dissatisfaction is not expressed in such strong terms that it would cause those against who it is directed at any real concern."

    There were some annoying bits in the judgement, where it really seemed that the ICO had just gone with QMUL's narrative, then there were other bits which I thought strongly stood up to arguments from QMUL that I thought might be more persuasive. There are a lot of complicated issues related to PACE, and I'm not sure how much we should expect an officer at the ICO to properly understand them all.

    I think that presenting this as a divide over whether CFS should be viewed and treated as a physical or psychiatric condition is a real distraction from the central issue of the quality of the PACE trial as a piece of research, and the danger of it's purported results misleading doctors and patients. I realise that this is a difficult topic to summarise but I felt like the ICO summary really promoted QMUL's narrative on this (although I've not seen Peter's submissions, so maybe he agreed with it, in which case I can't blame the ICO for going with it):

    Actually, I may have been a bit unfair on the ICO on my first reading, as when I went to find others bit like that which had annoyed me, it was the ICO giving QMUL's opinion, not their own: "This is based on the university's belief that there exists a group of patient activists who feel so strongly that research into chronic fatigue syndrome should focus solely on it being a physical illness that they would seek to discredit any work which takes a psychiatric approach."

    (18) "The treatment of chronic fatigue syndrome is a contentious area of science and the university considers that those involved in this area of work have concerns that they could become the target of adverse criticism in the event their research was not accepted by those who favour the condition being treated purely as a physical illness."

    There were still parts that made me think that the ICO officer had quite different values to myself, eg (31): "However she has found no reason to question the integrity of the researchers or those involved in the steering committee." I think that everyone's integrity should be questioned, particularly if they hold positions of power or authority. I'm not sure if she had the problems with PACE's recovery claims explained to her, but it's pretty difficult to understand them and not think that someone has acted with less than impressive integrity.

    The judgement made me think that need to remember that word of the replication crisis, and other problems in academic research, might not have spread to the ICO. Some parts of this judgement seemed founded in some slightly old fashioned ideas about academia. I need to remember that most people in the UK will not be aware of a lot of the issues we spend a lot of time discussing.

    Paragraph 17 is of interest for stating that the Principal for QMUL was familiar with the issues surrounding PACE. There's a lot from this person, and it really seems to indicate that the QMUL administration are not doing their jobs properly.

    In paragraph 24: "The university has argued that the criticism is unmerited and that the trial is not controversial among the majority of scientists in the field, or indeed experts in clinical trials." Wow. I think this is really damaging for those at the top of QMUL. They've committed themselves to defending PACE, but it's clear that key claims from the PACE researchers are indefensible. I was thinking that they must have realised by now that they should be trying to find a way to retreat on this topic, but even their new Principal is now completely committed.

    It's a real shame to lose information relating to the patient representative body.

    QMUL makes use of that spun BMJ Hawkes piece, and it seems to impress the ICO somewhat. I think it could be time to focus on trying to get some of the problems with that corrected. There are a few problems at the BMJ, and they don't seem keen on correcting any of them. It will be interesting to see what happens about SMILE not being prospectively registered.
     
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  19. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I liked the decision much more on a second reading.
    It is worth remembering this is a legal process and the ICO does not want to be appealed to the IT. They have to show they're being reasonable and have considered all the points made.
    It is disappointing the AfME contributions will be redacted.
    I could try to appeal some of the anonymization and other redactions, but I think that is not worth the bother.
    The ICO is well aware of the replication crisis. It was covered in the thousands of words and dozens of footnotes/references I provided.
     
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  20. Adrian

    Adrian Administrator Staff Member

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    I took that more as a comment that it is not the ICO's job to judge the integrity of the researchers and that comments made in the judgement were not intended to do that.

    I tend to agree that people in authority should have their judgement and integrity challenged. But I think the ICO shouldn't be judging people but to look at whether there is a case to release data to ensure that people can be held to account. In terms of the claims I think it was sufficient to see that concern was wide spread and also expressed by experts.
     

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