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ICO rules in favour of QMUL/PDW over FOI request 'Timing of changes to PACE Trial recovery criteria'

Dolphin

Senior Member
Messages
17,567
[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:


New updates for the request 'Timing of changes to PACE Trial recovery criteria'
============================================================================


Mr Matthees added an annotation (10 April 2015)

"In response to QMUL's refusal to grant this FOI request after an internal review, I submitted a complaint to the ICO. I sent the correspondence from th..."

https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial#comment-59096

Mr Matthees left an annotation (10 April 2015)
In response to QMUL's refusal to grant this FOI request after an internal review, I submitted a complaint to the ICO. I sent the correspondence from the whatdotheyknow.com thread and the following supporting document, which is similar to what was posted there, but for completeness I have placed it online for others to view:

https://sites.google.com/site/pacefoir/FOIR2_online-correspondence.pdf

https://sites.google.com/site/pacefoir/FOIR2_supporting-document.pdf

Unfortunately, QMUL managed to persuade the ICO case worker to rule that this request was "vexatious":

https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf

I did not expect such difficulty getting simple answers about a publicly funded clinical trial. Due to health-related limitations and other commitments, I doubt that I can sustain the time and effort required to pursue this particular case further myself. The public should not have to depend on a First-tier Tribunal just for a chance at getting clarification about trial methodology.

The disappointing ICO decision notice was emailed to me on the 18th March 2015. I have since written the following response for the record, addressing the main assertions and conclusions in the decision notice (which in my opinion were based on misguided assumptions and an imbalanced consideration of the evidence).

https://sites.google.com/site/pacefoir/FOIR2_response-to-ICO-decision-notice.pdf
 
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Messages
15,786
52. Much of the submission covers the background specifically relating to the PACE trial. Given that the scope of the investigation is to determine whether or not QMUL has correctly engaged the exemption at section 14, the Commissioner will not consider the detail of the PACE trial itself. He would note that there is no question that the subject matter is extremely important to the complainant and to the wider ME/CFS community. However, the Commissioner is content that QMUL has in place processes for review and dissemination of the information relating to the PACE trial and that Professor White has put in place mechanisms to ensure that as much information as possible is in the public domain.
Why is the commissioner content? How can he know the processes are sufficient, and oriented toward that goal?
Conclusion
53. In considering the case in a broad and holistic way, the Commissioner accepts that the request has, for the reasons set out by QMUL, had the effect of harassing the public authority. 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 – despite the complainant’s assertion to the contrary.
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?
54. The Commissioner considers that this request is more focussed on attacking and attempting to discredit the trial than in obtaining useful information on this topic. As such, the relative merits of the complainant’s motives are considerably diminished.
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.
59. The Commissioner considers that this particular request for information clearly meets the criteria for the application of section 14 as it has had the effect of harassing QMUL and placing on it a further burden. The request itself at a), c), e) and f) seeks confirmation or denial; it is not a request for recorded information. At a) and c) the complainant’s requests seek to have QMUL confirm its actions in terms of times in relation to the publication in the Lancet. At e) the complainant seeks to have QMUL identify any changes to the 2007 version of the trial protocol and whether they were guided by trial data. At f) the complainant seeks to have QMUL confirm or deny that changes to the ‘recovery’ criteria had been explicitly approved by the relevant trial oversight bodies. The requests are accusatory in tone, suggesting that the position is different from that set out over several years by QMUL. At b) the request seeks ‘suggestions’ made by one of those involved in a peer review and at d) seeks ‘approximate dates’. It is difficult to see how this request could have been intended as anything other than an attempt to undermine QMUL and consequently the trial itself..
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?
60. 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.
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.
61. In reaching his conclusion, the Commissioner would note that he is aware that this is a particularly contentious and controversial area of research. He has no doubt that the PACE trial is of significant interest within the ME/CFS community. However, his role is solely to determine whether the FOIA has been correctly applied. In this particular case he finds that, in all the circumstances, the request has caused a disproportionate amount of distress, irritation and disruption to the public authority. He also finds that it has been submitted as part of a campaign, the nature of which undermines its serious purpose and value.
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.
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
"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?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
"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?

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.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

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...?
 

rosamary

Senior Member
Messages
131
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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

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:

UK Parliamentary Group on Scientific Research into ME said:
numerous cases where advisors to the DWP [Dept for Work and Pensions] have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.


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.

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.
 

Tom Kindlon

Senior Member
Messages
1,734
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).

4. "Recovery" will be defined by meeting all four of the following criteria: (i) a Chalder Fatigue Questionnaire score of 3 or less 27], (ii) SF-36 physical Function score of 85 or above 47,48], (iii) a CGI score of 1 45], and (iv) the participant no longer meets Oxford criteria for CFS 2], CDC criteria for CFS 1] or the London criteria for ME 40].

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.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
what a Parliamentary Group has uncovered:

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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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).

a CGI score of 1 45

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.

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)
 

user9876

Senior Member
Messages
4,556
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.
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

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

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.
 

user9876

Senior Member
Messages
4,556
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.

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.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
'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!