Information Commissioner's Office orders release of PACE trial data

[user9876]

Fabricating the data requested would be a a clear fraud. I don't think that there's any realistic chance this will happen.

First thing to do with the data anyway is to replicate published values (means, SD etc) as this helps validate a correct understanding of the formats etc. I think it would be hard to fabricate data whilst keeping known values valid.

 

[John Mac]

I

Fabricating the data requested would be a a clear fraud. I don't think that there's any realistic chance this will happen.

If they are forced to hand over the data they will probably redact as much as possible to make it worthless. Then we start the merrygoround all over again. I think it will still be quite some time before we see all the data.

 

[SOC]

Maybe they are worried people might recognise their own data and realise it's been modified

Oh, that's good! It explains both why they wouldn't want to release the data (if they fudged it) AND why they'd be so freaked a patient would recognize their own data (which the patient should already know anyway).

 

[skipskip30]

Fabricating the data requested would be a a clear fraud. I don't think that there's any realistic chance this will happen.

Yes altering the data would be a serious crime so i really doubt they would do it either.

 

[A.B.]

I find the patient reports of harms associated with GET very difficult to reconcile with the PACE narrative that GET is a very safe treatment.

The reported physical function scores are not those of mildly sick patients that might be able to do GET without risking deterioration.

So where did all the deterioration go? Did it magically disappear?

That's where the fraud lies I suspect. A career ender if it was discovered - hiding severe adverse effects is serious matter.

 

[SOC]

Fabricating the data requested would be a a clear fraud. I don't think that there's any realistic chance this will happen.

Why? Researchers have fabricated data in the past knowing it was fraudulent. They do it because they feel their careers and reputations are on the line. And they don't think they'll get caught. Sound familiar?

 

[user9876]

I

If they are forced to hand over the data they will probably redact as much as possible to make it worthless. Then we start the merrygoround all over again. I think it will still be quite some time before we see all the data.

The data requested includes no personal information so they should not redact anything

 

[meadowlark]

Okay, you can be the Egg Sample

"Egg Sample" works for me!

All this reminds me of two dialect books I used in drama school, "Let's Talk Strine" (Let's Talk Australian) and "Fraffly Well Spoken" (Frightfully Well Spoken). They were more or less blunt instruments to get you into the general sound of the accent. Then you'd add nuance on your own. (The "Strine" one was fantastic.)

 

[jimells]

They(UK gov) need a way out --To back track and come out as the good guys. The NIH Collin's announcement has shown them the future and they don't want to be the bad guys. They just may let these "scientists" hang to achieve that objective.

Yes, they will be hung out to dry. The psychobabblers are about to find out first-hand what it means to be socially isolated.

 

[Sidereal]

PACE investigators, hi, since you are already reading our forum, please say no to the temptation to use industrial-strength paper shredders in the coming days, misplace laptops / hard drives, be visited by gremlins etc. and just hand over the damn data.

 

[user9876]

PACE investigators, hi, since you are already reading our forum, please say no to the temptation to use industrial-strength paper shredders in the coming days, misplace laptops / hard drives, be visited by gremlins etc. and just hand over the damn data.

The misplaced laptop excuse shouldn't cut it. As part of a clinical trial they need professional data management which will include offsite backup. I know that QMUL will have an IT department that can offer such services. Anything less should cause huge problems with the MRC in terms of not abiding by best practice.

 

[Sidereal]

The misplaced laptop excuse shouldn't cut it. As part of a clinical trial they need professional data management which will include offsite backup. I know that QMUL will have an IT department that can offer such services. Anything less should cause huge problems with the MRC in terms of not abiding by best practice.

@User, I was only joking. Made the same point you're making this morning on another thread.

 

[Snow Leopard]

PACE investigators, hi, since you are already reading our forum, please say no to the temptation to use industrial-strength paper shredders in the coming days, misplace laptops / hard drives, be visited by gremlins etc. and just hand over the damn data.

Having said that, it is very unlikely that the FOI request would have been made in the first place if all of the summary statistics as specified in the original protocol had been published.

 

[Sidereal]

James C.Coyne ‏@CoyneoftheRealm 16m16 minutes ago
Finished @TheLancetPsych letter with @KeithLaws ,Working on Mind the Brain post about why all scientists have stake in @QMU release of data

 

[user9876]

@User, I was only joking. Made the same point you're making this morning on another thread.

Yes I thought you were joking but I worry that data might get lost so thought I would comment.

 

[Denise]

I wish I could thank him for his work.

 

[Sidereal]

I wish I could thank him for his work.

Who, Coyne? You can. He's on twitter, facebook, blog and email.

 

[Denise]

Who, Coyne? You can. He's on twitter, facebook, blog and email.

Yes. I should have been clearer. I meant I wish I could thank Coyne.

 

[MeSci]

Oh, that's good! It explains both why they wouldn't want to release the data (if they fudged it) AND why they'd be so freaked a patient would recognize their own data (which the patient should already know anyway).

It's consistent with the extraordinary difficulties I have sometimes had with doctors and a hospital in getting copies of my own test results and medical records. The hospital kept referring me to their legal department whenever I asked!

 

[user9876]

I find the patient reports of harms associated with GET very difficult to reconcile with the PACE narrative that GET is a very safe treatment.

The reported physical function scores are not those of mildly sick patients that might be able to do GET without risking deterioration.

So where did all the deterioration go? Did it magically disappear?

That's where the fraud lies I suspect. A career ender if it was discovered - hiding severe adverse effects is serious matter.

I suspect that patients either did activity substitution where they reduced other things they were doing or didn't really follow the advice. However, the was someone in the latest MEA survey who said the deteriorated after GET in the PACE trial.

Of course Wessely claimed that there was a high level of compliance since they monitored sessions with therapists. But they did nothing to check what patients actually did