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Peter White complaining about PACE Trial FOI request and calling for changes to FOI laws

Discussion in 'General ME/CFS News' started by Dolphin, Dec 26, 2015.

  1. Dolphin

    Dolphin Senior Member

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    From @Maxwhd on Twitter:

    Somebody mentioned to me that Peter White has been lobbying on this issue but not sure I've seen the info posted before.

    http://www.twitlonger.com/show/n_1so3l6f

     
  2. sarah darwins

    sarah darwins I told you I was ill

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    So he's complaining about the need to keep "internal deliberations" private ... Which raises the question: what's that got to do with trial data?

    Overall, he seems to be saying that researchers like him, having been paid public money to carry out research, should be protected from public scrutiny of anything they do. Nice work if you can get it.
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    Good for you!
     
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  4. Esther12

    Esther12

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    Maxwhd turns up so much interesting stuff. I slightly reformatted to make it easier to see what has being said.

    He's arguing for Universities to be exempted from the FOIA.

    From: https://www.gov.uk/government/uploa...file/487271/Online_Responses_CitizenSpace.xls

    Peter White's submission:

    Q: What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36? - What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36?

    A: It is an important principle of science that internal deliberations should be undertaken in a "safe space", allowing for freely expressed arguments for and against decisions made in planning and implementing a scientific study. It is equally important that such decisions, and the reasons for making them, are recorded formally and accurately, so that these documents can be used as source references used at the time of writing up and publishing research. This would not be possible, or would be very limited, if such minutes of such meetings were known to be liable to public release. This would have a "chilling" effect on open discussion This is particularly the case in Medicine where the principle of patient involvement in research is so valuable - individual patients and patient organisations are vulnerable to abuse and harassment if their names were to be made public as part of such minutes. Making such data exempt from the Act would protect scientific work in controversial subjects within and outside of medicine. Please refer to Information Tribunal decision notice Appeal No: EA/2013/0019, where Judge Hughes outlines these arguments in more detail, in an appeal regarding a medical research trial that I led (see answers to question 6).

    Q: Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden? - Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden?

    A:
    I am the principal investigator (PI) of the PACE trial, the main findings of which were published in the Lancet medical journal in 2011 (White PD et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823-36. doi:10.1016/S0140-6736(11)60096-2). I write here in my personal capacity.

    The PACE trial is a trial of four treatments for patients suffering from chronic fatigue syndrome (CFS), which is sometimes called myalgic encephalomyelitis (ME). CFS is a controversial condition, and attracts a strong patient activist voice. This group has used the FoI Act many times since this main paper was published, asking for all sorts of data, from the minutes of all meetings overseeing the trial to all of the patient data collected. See the following for a description of activism (http://www.bmj.com/content/342/bmj.d3780)

    The administration of these requests has caused a very significant burden on the University's FOIA manager, the University's academic department of law, and myself as PI. I have had to spend a considerable amount of time addressing the requests, advising colleagues, collating the views of my research colleagues at other universities, and writing witness statements for the various appeals (internal, ICO and IT). This means that my further research into the causes and treatments of this debilitating and misunderstood illness has been delayed. Paradoxically, the time taken up in this has delayed publication of the papers that contain some of the very data that have been requested.

    Perhaps most damaging of all have been requests by two trial ex-participants to "destroy" all their data collected on them during the trial because of their concern that the data will not be held securely and confidentially, something we promised them to do as part of their giving informed consent. The first such request was received after we had finished all trial data collection and had started the main analysis. After some months of trying to obtain advice on what to do, we were advised to destroy this ex-participant's data, which we did (and which took some time to do due to the complexity of the data), but this meant that we had to restart the analysis, which caused several month's delay in publishing the main results paper in 2011. This paper was important since it showed that there were two treatments for this condition which were safe and moderately effective. It is estimated that some 250,000 people suffer from CFS in the UK.

    Section 22a of the Act is insufficient protection for science into controversial subjects, and requires that the research is on-going, so is irrelevant to completed research. We need science in the UK to be protected or it will continue to be damaged as this trial has been (other examples include climate change science, and research into the health effects of tobacco). Exempting Universities from the FOIA would achieve that. Exempting scientific research data produced by Universities and other higher educational institutes might be a workable alternative.
     
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  5. adreno

    adreno PR activist

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    Grumpy old man.
     
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  6. Dolphin

    Dolphin Senior Member

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    What does IT stand for?
     
  7. Chrisb

    Chrisb Senior Member

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    Information Tribunal?
     
  8. leela

    leela Slow But Hopeful

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    Red herring after red herring. Pul-eaze.
    I'm really tired of the repetition of how *burdensome* it is to have to continually *refuse* the FOI requests.
    And that bit about the subsequent delay in proper research and treatment of this terrible, debilitating illness....I just can't.

    I hope the whole scientific/academic community can see how transparently self-serving that buncha baloney is.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    ME advocates are in a situation different from most other health advocates.

    This should be part of the discussion. AIDS activists had to be very vocal in their time and for good reason. I don't know the history of MS activism up to the point where problems with myelin were discovered creating physical legitimacy for the illness.

    We also deserve the benefit of doubt. There are many indications of physical markers of illness--since we are not taken seriously by medicine it's only natural to voice our displeasure with how our illness is perceived. We're hardly unique.

    Since, PDW is promoting a version of this illness that is deemed untenable by the patient population he may not like being challenged but that does not excuse him from being challenged.

    I wonder how many other studies in other health subjects have been asked for FOI data and had it handed over no problem.
    PDW's complaints have no foundation.
     
  10. TiredSam

    TiredSam The wise nematode hibernates

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    The tiresome abuse and harassment narrative again, no evidence for that whatsoever. The only abuse and harassment patients and patient organisations have suffered so far is from Peter White and his BPS colleagues psychologising our illness, slandering patients and patient organisations, doing their best to make sure no-one takes us seriously, squandering the meagre funds available for scientific research into our illness, creating an environment where such research is discouraged, and making sure that terribly ill people unable to work have to fight for benefits they desperately need.
    ME wouldn't be a controversial subject if Peter White and his cronies hadn't decided to muscle in with their ridiculous BPS nonsense. I would welcome scientific work in ME being protected from the likes of PW, and one of the best ways to do that is to reveal the PACE trial for what it is. Fortunately scientists are currently doing precisely that, which is why PW is so afraid of transparency.
    That's your own fault for not just releasing the data as any honest scientist would. No need for you to spend all that time and effort hiding it whatsoever.
    Every cloud has a silver lining.
    Yes we do, we need the FOIA and transparency to protect us from PW.
    A very appropriate comparison, but not for the reasons he thinks.
     
    Last edited: Dec 26, 2015
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  11. seaturtle

    seaturtle

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    Notice that this isn't directly attributed to FOI requests. (But a casual reader would be forgiven for interpreting it to mean that it was directly attributable to FOI requests.) It could actually be related to other events, such as the loss of the recordings of therapy sessions from an unlocked drawer, if those participants were ever informed of the loss of their personal data.
     
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  12. sarah darwins

    sarah darwins I told you I was ill

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    Everything I've wanted to say for some time in one perfectly turned sentence. Great comment.
     
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  13. Esther12

    Esther12

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    Is it? An important principle of science is that researchers have a secret 'safe space' where they get to make decisions that have an important impact upon the lives of others, free from independent scrutiny? Who came up with that principle?
     
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  14. Esther12

    Esther12

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    If they were invollved in how QMUL rsponded to requests for PACE info, this doesn't reflect well on the ethics of their law department imo:

     
  15. leela

    leela Slow But Hopeful

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    Oh yeah? And what about the "safe space" that should be a given when a UK ME patient seeks treatment from their medical provider, hmm? The space that was coopted by these bozos such that patients get strong-armed into inappropriate and dangerous treatments, or labelled as having false illness beliefs when they refuse such unsafeness?

    Or how about the "safe space" this group of bullies have landscaped wherein ME patients get sectioned against their will for being witnesses to their own condition and suffering, and are subsequently denied any medical treatment at all and worse yet, their human rights? What about the patients' freely expressed arguments for or against decisions made in planning and implementing appropriate treatment?!?!

    The things coming out of this person's mouth would be diagnosable as sociopathic in a clinical setting.

    It is so infuriating to watch the vocabulary-acrobatics performed by this circus of reality-denying narcissists as they scramble to keep their egos in tact.
     
    Last edited: Dec 26, 2015
  16. alex3619

    alex3619 Senior Member

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    This is pretend science dominated by politics and rhetoric. If we are looking for an example of pseudoscience that has entrenched itself in medicine then this is a prime example. Medical historians will be mining this for decades.

    All these problems go away if they release this data to the scientific community. They do not even have to release it to patients. They have also admitted they created anonymized data in the past. There is no valid excuse. If cost is a factor then the only viable solution is to release it. If patient confidentiality is a factor then they can, as commented by Coyne, require nondisclosure agreements, which they have done in the past.

    Its clear this is not about data security, or scientific principle, or cost.

    PS We have asked for trial data. We do not need lots of details on individual patients. We could use maybe age, sex, BMI and possibly a couple of other things, at most. However none of these are completely necessary. Anonymized data based on things measured in the study are what is important. So things like individual 6 minute walking test data, step test data, SF36PF results, etc., which would not contain any information that can identify patients, should be released.
     
  17. Sean

    Sean Senior Member

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    The refusal of these legitimate requests has added a very significant burden on patients, their carers, and the whole of society.
     
  18. alex3619

    alex3619 Senior Member

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    Is it consistent to stand for patient rights such as confidentiality, and brand two trial patients as the most damaging complainants? When it is their right? When accusing two study volunteers of damaging the trial? Will this not harm recruitment in future studies?
     
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  19. soti

    soti

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    Did anyone ask for minutes of meetings? I'd agree that would be a pain. No one really takes minutes of conversations had in deciding the particulars of how to run a study. However, any relevant decisions should be detailed in the paper itself. And data should be free for the asking.
     
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  20. soti

    soti

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    And yes, the right of participants to withdraw from a study at any time and have their data destroyed is (or should be) sacrosanct, not something to complain about.
     

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