PACE data request FS50600710 (not the appeal case)

[Dolphin]

Thank you for your input Dr @Jonathan Edwards. I so agree this is a complete disgrace to science even for their low standards.

My understanding is the original requester would have to appeal within 28 days but you could provide an input to this?

I definitely think this one should be appealed as it is a absurd situation.

Looks like it might be too late:
http://search.ico.org.uk/ico/search/decisionnotice

Queen Mary University of London


29 March 2016, Education (University)


The complainant requested from Queen Mary University of London (?QMUL?) data connected with a published article about chronic fatigue syndrome. QMUL refused the request as vexatious under section 14(1) of FOIA. The Commissioner?s decision is that QMUL has correctly applied section 14(1) to the request. He does not therefore require it to take any further steps to ensure compliance with the legislation.


FOI 14:Not upheld

https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf

 

[BurnA]

Looks like it might be too late:

How come the date is 29 March but we are only hearing it now ?

 

[Dolphin]

I need to look at this in more detail but I think I should probably respond, or assist in a response. I think there is some sort of appeal allowed. The material produced by QMUL is a disgrace to science. Criticism of science is essential to the scientific method and if the science is really bad, as here, and critics are being fobbed off, they are entirely entitled to start showing their personal annoyance (just like QMUL).

There was a programme on the BBC the day before yesterday about the 'replication crisis' in psychology. The subtext was that psychology was coming to realise that much of its evidence is worthless. The defence is that that applies to other science a bit as well, and it does, but I am afraid it is not a defence. It seems to me that the exposure of the poor quality of PACE is symptomatic of a much wider realisation that psychology has got away with substandard science for too long. I do not know that much about other psychology research but if PACE is representative they really do have a problem.

Presumably nobody would have complained if a bunch of homeopaths had claimed some treatment worked and there was an outcry from the establishment, full of ridicule and scorn. PACE is just the same, so why is it protected?

I am travelling at present and a bit distracted but if I know who to write to maybe I can put it to them straight, as a director of PR, that the material from QMUL betrays a complete lack of understanding of why there is criticism and indeed a complete misunderstanding of how science should work. (Not to mention a remarkable lack of understanding of human nature on the part of a group of psychologists!)

Thanks for your interest.


If the deadline has passed, an alternative strategy would be for you to make a request yourself.

This can be done easily at: https://www.whatdotheyknow.com/

It would be hard for them to make some similar arguments for you

 

[BurnA]

It would be hard for them to make some similar arguments for you

He's a director of PR - he could be the ringleader !!

 

[Yogi]

Looks like it might be too late:

- is the decision notice date sent 29 March itself or is it later?
- we are only hearing about it now one month later.
-otherwise it was a few days ago on 26 april and the deadline over.

If the deadline missed what a very "well organised and orchestrated activist campaign" we are!

 

[Justin30]

Maybe a thread dedicated to how this happened to us, flu, vaccine, gradual onset, Drs work up, label from the Dr. What CBT and GET caused you, your life now, symptom description, QOL, etc.

Any thoughts

 

[Justin30]

- is the decision notice date sent 29 March itself or is it later?
- we are only hearing about it now one month later.
-otherwise it was a few days ago on 26 april and the deadline over.

If the deadline missed what a very "well organised and orchestrated activist campaign" we are!

What is going on here I thought this just started a couple days ago can we get a confirmation?

 

[Scarecrow]

What is going on here I thought this just started a couple days ago can we get a confirmation?

This is a different request.

 

[Justin30]

This is a different request.

Meaning an old request?

 

[Scarecrow]

Meaning an old request?

I think it's actually more recent but at a less advanced stage than the hearing last week.

I believe that this is some of the correspondence for this thread:
https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#outgoing-464451

 

[Scarecrow]

@Justin30, here's an old thread discussing the request:

http://forums.phoenixrising.me/inde...-theyve-already-published-in-graph-form.38978

 

[BurnA]

What I don't understand is why comments on PR are relevant. Why on earth should the applicant be held responsible, or his case disadvantaged, because of comments on a public forum over which he has no control?

Yes this is baffling.

How can they cherry pick some random posts on a completely different topic and use them as evidence of a campaign of animosity that somehow justifies the non release of data ?

They never even asked me to clarify the context of my post ......sniff

 

[Bob]

I need to look at this in more detail but I think I should probably respond, or assist in a response. I think there is some sort of appeal allowed.

Hi Jonathan, FYI, it's too late to appeal this decision notice. And, in any case, the only way to appeal would be to take it to a tribunal which is a full-on legal process.

 

[user9876]

Thanks for your interest.


If the deadline has passed, an alternative strategy would be for you to make a request yourself.

This can be done easily at: https://www.whatdotheyknow.com/

It would be hard for them to make some similar arguments for you

Another alternative is to write to the head of QMUL and point to the way they are handling the issue and maligning patients is outrageous. Perhaps suggesting he checks what the results would have been if they had followed best practice and actually published results from the protocol.

We shouldn't see the problem as White but as an institution who have failed to exert proper governance over the way a trial that they are responsible for is run. Of course it the figures of charges for CBT and GET of around 3800 per patient when their cost estimates were less than half of that then as an institution they may be unwilling to validate results.

 

[Esther12]

There's so much in this decision I wanted to pull out for comment that I ended up pulling out very little. This is a decision notice I'd really encourage people to read all of for themselves, even if you're not normally that interested.

I think it's also a sign that QMUL are likely to appeal if the Tribunal decide that the PACE data should be released. They've gone in so deep with the smearing of patients and PACE critics that if the requested data was released I think it would end up making a lot of the QMUL administration look terrible. If the data is released I think it will lead to it being widely acknowledged that patients' concerns were reasonable, and that those attempting to gain the release of PACE data had done a great service to science, in the face a great hostility.

If they're trawling the internet looking for angry comments about their quackery and the way that they've misrepresented their results, and that's all they've come up with, we're a bizarrely gentle group. I wonder if there's been any stigmatised and marginalised group fighting for justice that have been as meek and mild as QMUL and the ICO seem to think we should be.

QMUL explained that its strategic aims were to create and disseminate knowledge

So that's what they claimed, eh?

It believed that if it supplied some data, a requester might come back for more and that it was not unreasonable that it should seek at this juncture to reduce the burden on it and its staff.

At this juncture? People have been asking for results for the PACE protocol outcomes since 2011! If you don't like fighting against those reasonable and important requests, maybe they should release the data?

Throughout QMUL's arguments they seem to be working on the assumption that it's immoral to challenge authority.

They did not believe in it and therefore they attacked it, often with obsessional attention to detail and a refusal to accept the integrity of the science.

Sorry about that, happen to think that the details matter. It's quite clear that QMUL do not.

QMUL explained that it also took in to account that some of the requests had been repeated, on one occasion where the requester stated that the sole purpose for this was so that it could be escalated to the ICO because of “timing issues”. Though it accepted that this was a valid reason for resubmitting a request, it believed that the motivation was not to obtain information, but to create more work by appealing to the ICO as he expected it to be refused.

Seeing as patients have so little energy of their own, does it really seem likely that they're going to put it into FOI requests when they don't really want the information, just to make White spend his time refusing them? It seems likely to QMUL, seemingly based on nothing more than their prejudices.

It stated that it had provided explanations and data wherever possible when previous PACE-related requests had been received in the past. As it had indicated above, it was not onerous to supply the data, but it considered that in the end that the refusal was justified at this point in time given the context and history.

Wherever possible? They were first asked to provide data for the outcomes listed in the PACE protocol soon after the 2011 paper. They've trotted out an endless series of excuses, some contradictory, for not releasing them. This request was for data that could be easily released... but the context and history of repeated requests made for important data that they've fought against releasing important data means that this shouldn't be released either.

LOL at "there is even a hashtag on Twitter #PACEtrial" - is there no depravity to which they will not sink?!

Seemed that these were the key factual assumptions used to justify the claim that the request was vexatious:

However, QMUL has explained that the results of the PACE trial have been (and continue to be) published and that these results have been independently verified.

Furthermore, the Commissioner is satisfied that QMUL has in place appropriate processes for review and dissemination of information relating to the PACE trial.

How have the PACE trial's fitness results have been independently verified? How has the ICO assessed whether QMUL's processes are appropriate? We're in a bit of a catch-22, where the data which will show how inappropriate QMUL's processes are will not be released as to think that they do not have appropriate processes is taken to mean one is part of a vexatious campaign.

 

[Hutan]

Graham was looking for the data for this graph:

Right now there is less of a need for the data behind that chart than there is for publicity about QMUL's refusal to release the data.

Despite the tiny chart with the appallingly inappropriate scale (and despite all the other problems with participant selection and so on), it is quite clear that CBT and GET resulted in poorer fitness than the other treatments by the end of the trial.

This single graph and QMUL's refusal to release the data surely makes for a very easily understood story. If @Graham is behind the data request, all the better for a personally engaging angle. Can we alert any journalists who have written helpful pieces in the past to cover the story?

QMUL's refusal actually creates an opportunity for us.

 

[Dolphin]

There's so much in this decision I wanted to pull out for comment that I ended up pulling out very little. This is a decision notice I'd really encourage people to read all of for themselves, even if you're not normally that interested.

If anyone does a blog post on it, please highlight it here.

 

[Chrisb]

I must admit to having an especial preference for the statement in Para 38

"Papers which were published were analysed in minute detail, for example on the Phoenix rising website......."

This manages to combine the suggestions that minute analysis is bad, and that it as a course of action not previously considered by the researchers.

 

[adreno]

They really are afraid of us, it seems. That's good!

I don't think release of the data is all that important for us. We have two major arguments against PACE, 1) the follow up study show zero effect of their intervention, and 2) their unscientific refusal to release data. The winds are very much turning towards open data, and time is against these dinosaurs.

 

[Valentijn]

I think it's also a sign that QMUL are likely to appeal if the Tribunal decide that the PACE data should be released.

At this stage, further appeal really isn't possible. From what I understand, the only grounds would be if the tribunal really messed up from a strictly procedural/legal standpoint. They can't appeal based on not liking how the tribunal interprets the FOI requirements, or how they apply their interpretations to the details of the case.