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Information Commissioner's Office lets PACE Trial team/QMUL get away with not releasing some data

jimells

Senior Member
Messages
2,009
Location
northern Maine
Probably, but still.... if you are the administrators of a serious university, would you want your researchers making a big deal of the fact that they can't retrieve their research data from spreadsheets?

I should think it would depend on how much money the researchers are bringing in, and who the researchers are connected to. A big check, like a coat of paint, can cover a lot of sin.
 

SOC

Senior Member
Messages
7,849
I should think it would depend on how much money the researchers are bringing in, and who the researchers are connected to. A big check, like a coat of paint, can cover a lot of sin.
So true! :rolleyes: Nevertheless you'd think their reputation as a research institution would be more valuable than the donations to one group of researchers.... Then, of course, there's always the immediate greed factor. They see the money and they don't want to lose it, so they choose not to think about the long-term consequences. Sigh.... politics and money are not the best friends of ethics and integrity.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
There is likely an internal view that there is something to 'lose' from being open with the data. I think that's a rather sad thing for the notion of modern scientific method and given that it is the tax payer and the patient that ultimately loses out from this information remaining hidden, I think it is doubly sad.

Does anyone benefit from that?
Not science.
Not the tax payer.
Not the patient.
I suppose they benefit from it, or believe they do; though if their conclusions aren't solid enough to withstand transparency, one has to wonder if other researchers will continue to take them seriously.

What do the researchers have to lose from publication of their data, if it reveals the research to be worthless?

Their jobs, their incomes, their reputations, their mutually-beneficial relationships with the Department of Work and Pensions and possibly insurance people, their prospects of getting knighthoods...?

I wonder how well they are sleeping these days?
 

user9876

Senior Member
Messages
4,556
So true! :rolleyes: Nevertheless you'd think their reputation as a research institution would be more valuable than the donations to one group of researchers.... Then, of course, there's always the immediate greed factor. They see the money and they don't want to lose it, so they choose not to think about the long-term consequences. Sigh.... politics and money are not the best friends of ethics and integrity.

The problem is the release of the data may harm QMULs reputation far more than not releasing it. Looking sleazy is better than being shown to have spun recovery results from a trial - we know they are badly spun because the thresholds are so farcical.
 

duncan

Senior Member
Messages
2,240
Would be nice if the university's student newspaper caught wind of the shenanigans and wrote up a report exposing it. Some students newspapers are maverick enough, and eager to prove their independence and hutzpah, to do just that.

Wishful, thinking, I know.
 

SOC

Senior Member
Messages
7,849
The problem is the release of the data may harm QMULs reputation far more than not releasing it. Looking sleazy is better than being shown to have spun recovery results from a trial - we know they are badly spun because the thresholds are so farcical.
Yes, there we have the real story, I believe. They're in a difficult (for them) CYA situation. Let's hope the administrators are pissed at these lousy so-called researchers for putting the university in this situation of appearing either utterly inept or fundamentally dishonest, with no "safe" place for them to stand.
 

user9876

Senior Member
Messages
4,556
Yes, there we have the real story, I believe. They're in a difficult (for them) CYA situation. Let's hope the administrators are pissed at these lousy so-called researchers for putting the university in this situation of appearing either utterly inept or fundamentally dishonest, with no "safe" place for them to stand.
I suspect the administrators or the people in the governance committees don't have a clue about what is going on.
 

worldbackwards

Senior Member
Messages
2,051
What do the researchers have to lose from publication of their data, if it reveals the research to be worthless?

Their jobs, their incomes, their reputations, their mutually-beneficial relationships with the Department of Work and Pensions and possibly insurance people, their prospects of getting knighthoods...?

I wonder how well they are sleeping these days?
Just fine, apparently ;)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I suspect the administrators or the people in the governance committees don't have a clue about what is going on.

Yes, I would guess that's the case. When a crap paper can pass peer review in a top scientific journal, and numerous bodies and individuals that should know better cite it as authoritative, what chance will people at the top of admin structures have in understanding it? They may not include any scientists.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Would be nice if the university's student newspaper caught wind of the shenanigans and wrote up a report exposing it. Some students newspapers are maverick enough, and eager to prove their independence and hutzpah, to do just that.

Wishful, thinking, I know.

It's a good thought. I wonder how independent QMUL's student body is. Unfortunately my uni's (the Open University's) student body had (has?) a very incestuous relationship with the uni, so that they were unwilling to publish any controversial stuff that portrayed university staff or academics in a bad light.

I think that this may be quite unusual though.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
It's a good thought. I wonder how independent QMUL's student body is. Unfortunately my uni's (the Open University's) student body had (has?) a very incestuous relationship with the uni, so that they were unwilling to publish any controversial stuff that portrayed university staff or academics in a bad light.

I think that this may be quite unusual though.

Here is the QMUL Students' Union site.
 

Dolphin

Senior Member
Messages
17,567
(In case anyone missed it)
The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
http://www.virology.ws/2015/10/21/trial-by-error-i/

There's an introduction and summary at the start if you don't want to take on the whole thing.

It's being discussed in this PR thread:
http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

ME Network have also posted their own summary piece:
http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/