Queen Mary's appeal ICO decision on PACE data

[SOC]

There's a big difference (by scientific standards) between the sort of spin and misrepresentation we've seen from PACE and outright fabricating their data. imo, there's no way they'd do that. At the moment a lot of people in authority would be willing to semi-back them with 'no study is perfect, less than ideal, mistakes were made, sure of good intentions' platitudes. If they were found to have fabricated data they'd be done.

While I agree with your assessment, there's still a little voice reminding me that researchers have fabricated data for less compelling reasons than the PACE authors have.

My thinking atm is that they've published too much misinterpretation to be able to go back and falsify the data so that it fits all their claims. It's just too complex given you know there will be people going over it with fine-toothed combs. One way or another they'd get caught out. The amount of time and effort to cover their tracks would be immense, and even then I'm not sure it would be possible to make all the pieces fit together. Their best bet is to try to keep the data from the public entirely, and if that's not possible, to delay it so long that it becomes a non-issue (unlikely) or the major players retire and become beyond suffering any professional consequences for their misconduct.

 

[Esther12]

Also too many people are involved to make falsifying it practical. Personally, I think that the people with the most incentive to falsify would still realise it would be a bad mistake for them to do it, and on top of that, there are practical reasons which would make doing so very difficult. PACE is already under scrutiny, and it's passed the point where they can expect everyone to give them the benefit of the doubt.

 

[Large Donner]

"We refuse to participate in the peer review process because its just way to vexatious. Our data will not be shared with Peer reviewers from now on cos it just encourages public participation and clarity of information in studies and.....umm hold on.....if we want to say patients are vexatious for asking for info we wont get away with this anymore cos the data wont be available to anyone ever......so we dont get to call anyone vexatious anymore"

"But at least we don't have to use the vexatious line on FOI requests"

"Ye that would solve everything, no peer review cos it could just get too vexatious, lets have a whole new era of publications where we just make pronouncements and don't even collect data or do studies.... we can sell it to the government as cost effective"

"Wow that's brilliant no data no FOI requests, we just become priests and the word vexatious goes back into the box like it is for anyone who has never been refused an FOI request like the whole of the rest of the general public who haven't even heard of the word vexatious".

"But what if people call us vexatious for introducing all these new processes?"

"What does vexatious mean, there's no such word anymore!"

"Quick get the SMC on the phone".

"Holy Shit the DSM 6 is proposing vexatious personality disorder as a new category for the next revision".....now what?"

"This is good, this is good....We can use this, but what do we do about FOI and peer review in the meantime, can we semi retire the word vexatious and later bring it back in as a psychiatric disorder?"

"SHUT UP WILL YOU I'M TRYING TO THINK"!!........................

 

[Mark]

Very disappointing, but not surprising that they have appealed. They will clearly spin it out as long as they can and the outcome of the appeal is by no means certain - QMUL's case is threadbare at best, but I suspect it may come down to who is on the panel making the decision.

Bear in mind that the UK government is in the process of restricting the FOI legislation in the UK; they seem to be planning to partly repeal it, and I think that 'vexatious' requests to academics is one of the main things they've cited as something they want to stop. I suspect that the PACE FOI requests, and the protestations about them from PACE researchers, may even have been a significant driver for the plans to curtail FOI legislation; some of the stuff I've read about their plans seems to suggest this, but I haven't looked into it in any depth.

Anyway, this curtailing of FOI seems to be fairly high on the UK government's agenda right now, it was mentioned just a week or two ago. I don't know how it might affect existing requests going through the system, if they do change the FOI rules, but I do have this fear that by the time the appeal is heard and the deadline to release the data is reached, the law may have changed and they may get away with it. FOI requests seem to take a long time to go through the system as well, so the last chance to submit further FOI requests on PACE may already have gone...

 

[Denise]

Apologies if this has already been linked to:
http://valerieeliotsmith.com/2015/1...rs-decision-on-disclosure-of-pace-trial-data/

 

[Hip]

The thing is, I think that even anxiety and OCD will end up having biological causes which can be treated medically in the future. You just wait

I think there is research indicating that OCD does have a physiological cause (an organic physical cause in the brain), and so ultimately, I expect we will have an OCD treatment that will address this physical cause.

However, as a Band-Aid, cognitive behavioral therapy seems to offer some help for OCD (in contrast to ME/CFS, where its application has been a bit of dismal failure — hence the need to manipulate the PACE CBT research in a dishonest way).

 

[MeSci]

Apologies if this has already been linked to:
http://valerieeliotsmith.com/2015/1...rs-decision-on-disclosure-of-pace-trial-data/

Well, I identify with those who are

desperate to get good evidence on which to base their future treatment.

Who doesn't?

 

[BurnA]

Just wondering : Do we expect the data to tell us something ?

I mean what if the data just backs up their papers ? What are the chances of this? I ask only because I don't want to be disappointed if the data is released.

 

[worldbackwards]

I mean what if the data just backs up their papers ? What are the chances of this?

I suspect that this is small. Otherwise, why make such a fuss?

 

[Esther12]

Just wondering : Do we expect the data to tell us something ?

I mean what if the data just backs up their papers ? What are the chances of this? I ask only because I don't want to be disappointed if the data is released.

It looks like this will allow for the calculation and release of results for a lot of the outcomes the PACE researchers had decided upon in their protocol. This will allow us to hold them to the standards that they set for themselves.

 

[leela]

I think resetting the "recovered" bar partway through the trial to what previously qualified a patient for entry is a blatant form of data tampering.
That right there should have been enough to get the whole daggung thing thrown out.

While I agree with @SOC that it would be nearly impossible to actually falsify the data to match their claims now, there will however be time to get out that big fat black pen and redact in the name of "anonymization" anything that looks sloppy. I've seen many government docs -- including innocuous emails from CFSAC -- redacted beyond recognition.

 

[Hip]

Has anyone though of writing to the Principal of Queen Mary College, University of London, and asking him to intervene?

The President and Principal of Queen Mary College is Professor Simon Gaskell. He is a professor of biological chemistry, and looks like a no-nonsense hard science man. His email is: principal@qmul.ac.uk

The Wikipedia page about him is here.

The PACE trial appears to have been conducted at the Wolfson Institute of Preventive Medicine, part of Queen Mary College.

It is quite possible that the Principal of Queen Mary College knows nothing about the repeated requests to get the data from the PACE trial released. This whole saga might only be known about within the Wolfson Institute, or even only known about by the small group of PACE psychiatrists and psychologists like Prof Peter White who are listed on the Wolfson Institute staff.


Please though, if anyone feels like writing to Professor Simon Gaskell, be calm and level-headed, carefully explaining the situation, rather than taking an angry approach. With a carefully-constructed letter, Professor Simon Gaskell could become an ally in the efforts to get the PACE data released.

 

[moosie]

Very disappointing, but not surprising that they have appealed. They will clearly spin it out as long as they can and the outcome of the appeal is by no means certain - QMUL's case is threadbare at best, but I suspect it may come down to who is on the panel making the decision.

Bear in mind that the UK government is in the process of restricting the FOI legislation in the UK; they seem to be planning to partly repeal it, and I think that 'vexatious' requests to academics is one of the main things they've cited as something they want to stop. I suspect that the PACE FOI requests, and the protestations about them from PACE researchers, may even have been a significant driver for the plans to curtail FOI legislation; some of the stuff I've read about their plans seems to suggest this, but I haven't looked into it in any depth.

Anyway, this curtailing of FOI seems to be fairly high on the UK government's agenda right now, it was mentioned just a week or two ago. I don't know how it might affect existing requests going through the system, if they do change the FOI rules, but I do have this fear that by the time the appeal is heard and the deadline to release the data is reached, the law may have changed and they may get away with it. FOI requests seem to take a long time to go through the system as well, so the last chance to submit further FOI requests on PACE may already have gone...

I had forgotten about this. I have heard about these plans and the fact that it is directly linked to the number of requests linked to the PACE trial. It is such a scandal that they may be going to stop academics being held accountable in this way. What do we do? There has to be something.

I had been wondering why on earth the PACE trial authors would want to drag out the process any longer - surely they are in a hopeless position. Well this makes perfect sense.

I know we want this data but even without the data surely they are fighting a loosing battle - bottom line they changed the outcomes and even then the result was nil.

 

[sarah darwins]

@Hip - unfortunately I don't think there's the slightest chance that senior management at St Mary's are unaware of this. In fact, I'm sure they would routinely hear about FOI requests before the academics concerned. And there's no way an appeal against this decision would take place without approval from the top — in fact, it's probably not the PACE trial authors who made the decision to appeal.

Sadly, I suspect St Mary's see this as a matter of academic independence, though to me it's more a matter of academic arrogance ("imagine, the Great Unwashed daring to question us!")

Edit: p.s. as the DWP provided some of the funding for PACE, they may have had a say in all this, too. We will probably never know.

 

[Hip]

unfortunately I don't think there's the slightest chance that senior management at St Mary's are unaware of this. In fact, I'm sure they would routinely hear about FOI requests before the academics concerned.

Are you sure about this, or just having a guess?

This article says that on average, a UK university receives 184 freedom of information (FOI) requests per year. It seems quite possible that these FOI matters, many of which I should think can be a bit tedious, are not within the Principal's remit, and even if they were, I doubt that he has detailed knowledge of each of them, given there are so many each year.



In terms of tedious, this FOI request takes the biscuit (quite literally):

Dear University College London,

How much does the Provost spend on biscuits per year? How many
packets does he get through? What is his favourite kind of biscuit?

Yours faithfully,

Rebecca Pinnington

Dear Finance.FOI Requests,

Please send a breakdown of the catering costs incurred within the
last five years, with specific reference to the proportion of
catering costs directly relating to biscuits. For what events are
biscuits provided? Who provides biscuits -- is it Sodexo, or do you
do Tesco runs?

If you are able, it would also be pertinent if you could mention
the types of biscuits commonly ordered.

Yours sincerely,

Rebecca Pinnington

 

[Kati]

Are you sure about this, or just having a guess?

This article says that on average, a UK university receives 184 freedom of information (FOI) requests per year. It seems quite possible that these FOI matters, many of which can be a bit tedious, are not within the Principal's remit, and even if they were, I doubt that he has detailed knowledge of each of them.



In terms of tedious, this FOI request takes the biscuit (quite literally):

Vexacious. Very very vexacious.

 

[sarah darwins]

Are you sure about this, or just having a guess?

Having a guess. But, really, this is pretty big news. I'd be astonished if the College Principal wasn't well aware of it — not to mention the college's lawyers. There's a lot at stake.

 

[Hip]

But, really, this is pretty big news.

It may be news in our little world of ME/CFS and its websites; but I am not aware of any newspaper articles as yet. Though hopefully there will be some soon.

 

[SOC]

It is so extremely unlikely as to be next to impossible that the university's legal department and consequently it's administration doesn't know about this. These kinds of legal requirements are not submitted directly to the researchers involved, nor are they managed by the researchers. This is administration-level work. The administration most likely consults with the researchers about the issues involved, but the administration is not unaware. When it's a matter of this magnitude, the likelihood that the administration is not directly involved is vanishingly small.

Face it, QMUL administration is part of the cover up. The researchers could very well be misleading their administration about the issues and background, possibly even lying to them, but while the administration may be deluded, they are not unaware.

 

[SOC]

It may be news in our little world of ME/CFS and its websites; but I am not aware of any newspaper articles as yet. Though hopefully there will be some soon.

An FOI on a major study with multiple papers all of which have affected both national and international policy is not just "our little world of ME/CFS". This is not a question about the Provost's biscuits, this is a very large and influential research project. The administration most assuredly was aware of this research as it was being done, and more so since multiple FOI requests have been filed.

QMUL is trying to cover its behind, not just that of the researchers. If this was some small, inconsequential study the legal department wouldn't be bothering with it at all. They'd just tell the researchers to quit wasting university time and money and release their unimportant data. The university is fighting because they know the university's reputation is on the line. It wouldn't be worth the legal department or administration's time otherwise.