The 12th Invest in ME Research Conference June, 2017, Part 2
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ICO rules in favour of QMUL/PDW over FOI request 'Timing of changes to PACE Trial recovery criteria'

Discussion in 'General ME/CFS News' started by Dolphin, Apr 10, 2015.

  1. Dolphin

    Dolphin Senior Member

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    [ICO = Information Commissioner's Office. PDW=Peter Denton White, lead principal investigator of the £5 million PACE Trial. QMUL = Queen Mary University of London, where he is based]

    Just got the following e-mail today:


     
    Last edited: Apr 10, 2015
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  2. Valentijn

    Valentijn Senior Member

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    Why is the commissioner content? How can he know the processes are sufficient, and oriented toward that goal?
    I don't see any explanation for how this request is part of some campaign, especially when there's no proof of a campaign given in the first place. Which online posts? Which "complaints"? Are they talking about the published letters to the editor, or the complaint which was upheld when one of the journals made some blatantly false claims about the PACE trial outcomes? How do those other FOI requests harass the researchers, and how do they supposedly fit in with this request?
    How does he support that opinion? And how could releasing trial data "discredit" it, if all of the relevant information has supposedly been released already, and if it is as robust as the Commissioner is blindly assuming? If the data supports discrediting the trial, then what is the rationale in protecting it from being discredited? Science should win, not the feelings of the researchers nor even the reputations which they have staked upon their research.
    FFS, by that standard every FOI request ever made on any subject to any party is "accusatory" and constitutes harassment. The very act of asking "is there more data" and "what is that data" inherently "accuses" someone of potentially having additional relevant data which has not been publicly released.

    And again ... if the release of data undermines an institution and/or its research, then that would seem to strongly incentivize the release of the data, not the protection of it! Does this Commissioner having any understanding of, or respect for, scientific principles and processes?
    Why is there no question? There is no way to prove intentions, and the more likely explanation is that people actually just want the data. The research was funded with public money, the authors express complete confidence in their results, and releasing that data should only strengthen their position if their claims are true.
    Funny, I could say exactly the same things about the publication and publicity campaign instigated by the PACE authors and their buddies :rolleyes:

    The Commissioner's entire decision notice is a shockingly unreasonable, defamatory, and partisan response.
     
    Last edited: Apr 11, 2015
  3. sarah darwins

    sarah darwins I told you I was ill

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    "Viewed in the context of the other requests received, online posts and complaints to the Lancet and BMJ, the Commissioner accepts that QMUL is correct to view the request as part of a campaign"

    So if a lot of members of the public are asking the same question, that's a campaign, and this means the publicly funded body in question has no obligation to answer the question.

    ie. the greater the number of people who want to know the answer to a question, the less obligation the publicly funded body has to answer it.

    OK, that's clear, then. Only questions of little interest will be answered. Seems fair. Who do these pesky taxpayers think they are?
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Beautifully summarised!

    I agree with @Valentijn that the Commissioner is potentially being defamatory. He is accusing someone, who is publicly (partly) named, of being part of a campaign bent on harassing researchers. OTOH I can't find Mr Mathees's full name on the site, which may make a difference.
     
    Last edited: Apr 11, 2015
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  5. Sean

    Sean Senior Member

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    They are just doing a (Lord Robert) Winston: regurgitating the same old lame excuses they have been handed by White, et al.
     
  6. Valentijn

    Valentijn Senior Member

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    Somehow I doubt that's part of the job description. It's pretty pathetic when a civil servant is so grossly failing to do his job, and not even trying to pretend to be unbiased.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Having worked in the Civil Service, I can tell you that thinking is not encouraged in employees. Doing what you are told is. So who is telling the commissioner to do this...?
     
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  8. rosamary

    rosamary Senior Member

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    Well, this is hardly a surprise. This mr matthees (?) is obviously in an establishment fix. It is far easier to defend a big shot like Prof Pete than upset him.

    In fact, I suspect Pete wrote the responses for him.

    It sucks. It's wrong. It's unprofessional . But aren't most of the big-shots in the UK?

    The response tells us a lot.
     
  9. Zeno

    Zeno

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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  11. jimells

    jimells Senior Member

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    Hmmm, I didn't know I was part of a worldwide conspiracy to vexate Sir Simon and friends. Where's the next meeting? Will there be snacks and nap-time?

    And of course there is no organized campaign to keep the psychobabblers on top. Sir Simon, the Science Media Centre, QMUL, none of them are receiving cash and political support from UNUM and other insurers regardless of what a Parliamentary Group has uncovered:


    The first duty of a bureaucrat is to make the Boss look good (unless one wants their job). I'd say this one is due for a raise and a promotion.
     
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  12. Tom Kindlon

    Tom Kindlon Senior Member

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    Just because QMUL/Peter White and the PACE Trial team have published a lot of data doesn't mean they definitely were not selective in what they have and haven't published. The ICO for some bizarre reason has ignored this.
    It would be very interesting for example to get the data on the percentages recovered by the original recovery criteria (i.e. those in the published protocol).

    The published trial definition of recovery was different for all four elements (the clinical recovery definition did use part (iv)).

    This very much looks like an establishment entity has been given the benefit of the doubt. I doubt such a simplistic view of the issues would happen if a drug company was involved.
     
  13. sarah darwins

    sarah darwins I told you I was ill

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    Good grief. I hadn't realised a parliamentary group had been that specific. And still the people they identified as having a clear vested interest in promoting a particular theory of ME causation are ruling the roost.

    Looking it up, the then Secretary of Sate's 'response' was interesting:

    Entitlement to Disability Living Allowance depends on the effects that severe physical or mental disability has on a person's need for personal care and/or their ability to walk, and not on particular disabilities or diagnoses. The benefit is available to people with myalgic encephalomyelitis (which can have a physical basis or a psychological basis, or can be due to a combination of factors) on exactly the same terms as other severely disabled people, and they can qualify for it provided that they meet the usual entitlement conditions.​

    No attempt whatsoever to address the vested interest point.

    Interesting to note from the bit in parentheses that the then Secretary of State (John Hutton?) knows something no one else does: what causes ME.
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I find it dispiriting to see a government officer behaving in this way. I am not sure in what way I can be help. However, the statement made by the ICO:

    In terms of academic freedom the Commissioner notes that Professor White has sought to publish as much information as possible regarding the trial. Irrespective of this he has been put in a position of handling FOIA requests about his research. There is no question that the number of FOIA requests are an attempt to discredit the trial which of course calls into question the ability to retain that academic freedom; not only on Professor White’s part but on the part of those conducting peer reviews.

    is, in my view entirely inappropriate and, as indicated by others, defamatory by implication. Academic freedom consists of being able to investigate scientific matters without interference and to make the findings public without interference. It has nothing to do with refusing to make information public, which is clearly the case here. It is perfectly acceptable in science to 'attempt to discredit' a piece of work if it is scientifically flawed, as I believe is the case here. The whole point of science is to demonstrate that currently held interpretations of events are flawed and can be improved on. Scientists have often had to 'campaign' to move knowledge forward. The only thing unusual here is that patients have been more on the ball than the science community.

    I have previously heard Dr White claim that criticism of the PACE trial is an attack on science. The attack on science is the withholding of data in the face of reasonable enquiry from a large community of patients and researchers to whom the data are important. The authors have made it clear that the database is available for further analysis by themselves. It should also be available to others.

    I am happy to be quoted on this matter.
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    He's nearly right. It's the PACE trial which is an attack on science. He'll get it next time.
     
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  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In case anyone else was wondering why patients' computer-generated imagery score was being measured, CGI here actually stands for clinical global impression! (Just looked it up in the study)
     
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  17. deleder2k

    deleder2k Senior Member

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    Why aren't the researchers of the Pace trial obligated to release the data when requested to do so? It should be a requirement when a study is funded by the public.
     
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  18. user9876

    user9876 Senior Member

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    You might think that but a previous tribunal (The court after the ICO's office ruling) basically said that academic freedom should outweigh the FoI act

    http://www.informationtribunal.gov.uk/DBFiles/Decision/i1069/20130822 Decision EA20130019.pdf

    The way I read that is that academics should be allowed to pick and choose what they publish and others have no right to information to keep them accountable.

    It seems to me that White is telling the ICO that they are publishing as much information as possible and that its complex collate and publish additional information requested via FoI requests. The ICOs office seems to believe that in a most uncritical manner.

    In terms of this request I assume that all trials would have a formal project management process especially ones of this size. If they do all information about timings of protocol changes will be in the change control log for the trial. If this is the case it would be easy for an admin assistant to extract the data. Instead White spend hours or days collating data and gathering all criticism to send to the ICO. Since he claimed the campaign to discredit the trial included letters to the BMJ he should be very aware of the criticisms but he refuses to address them.
     
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  19. user9876

    user9876 Senior Member

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    They have said they would release them to appropriate academics but I think they know they are safe to say that. The MRC don't seem to want to get involved.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    'A parallel process of dissemination through FOIA is unlikely to be as effective or robust as the process of lectures, seminars, conferences and publications which are the lifeblood of the University. They are likely to be a diversion from the effective evaluation, publication and scrutiny of research through the academic processes. All too often such requests are likely to be motivated by a desire not to have information but a desire to divert and improperly undermine the research and publication process – in football terminology – playing the man and not the ball'

    This is another bit of disgraceful mud-slinging. If the trial is sound then it is not going to be undermined. And you cannot undermine a process of non-publication!
     
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