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Coyne: In the standoff over release of the PACE PLOS One trial data, has the journal just blinked?

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Yogi

Senior Member
Messages
1,132
It is clear given the length of time since Coyne's request in November that PACE investigators are stonewalling this and it is a concern that Weasely said that they are organising an "independent review". They will be attempting to come out in a few months and say the " independent review" by their friends and associates found a few minor honest mistakes but everything is overall okay with the trial. WE MUST NOT ACCEPT THEIR INDEPENDENT REVIEW. We need the 42 signatories to the Lancet to be given the data.

QMUL claim that Peter White is getting annoyed and frustrated with all the data requests but this clearly shows that this is BS as they are spending so much effort with persuading PLOS avoiding the release of data.

These PACE PIs will not release their data without further pressure added on them for the data . We need to redouble our effort!!!

Their actions are the definition of vexatious as the pressure is mounting and the truth is coming out sooner or later.
 
BurnA

BurnA

Senior Member
Messages
2,087
....but there may be situations where such follow up establishes that access to the data requires a process of evaluation by an ethics committee. If that is the case, our position is that the readers requesting the data should pursue such approval process in the context of a defined research proposal, in the same manner as the researchers who undertook the work described in the article did.
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That doesn't read good.

Some good comments and replies by Coyne. He isn't giving up which is good.
 
BurnA

BurnA

Senior Member
Messages
2,087
Bob said:
If there is an independent review, i think it's only in relation to whether and how they should make the data available.
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He was spouting some nonsense at one stage about releasing the data for independant review if I remember correctly. Of course he means, releasing it to friends and family for independent review.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
BurnA said:
He was spouting some nonsense at one stage about releasing the data for independant review if I remember correctly. Of course he means, releasing it to friends and family for independent review.
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Ah, yes, that's the Cochrane group, which is so 'independent' that it includes White & co who co-wrote the protocol for the review before showing their data to themselves.
 
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Yogi

Senior Member
Messages
1,132
Sasha said:
Where have you heard about this "independent review", @Yogi?
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Andrew Gelman referred to it here

"This seems reasonable to me, and not in contradiction with the points that Wessely made. Indeed, when I asked Wessely what he thought of this, he replied that an independent review group in a different country had already re-analyzed some of the data and would be publishing something soon. So maybe we’re closer to convergence on this particular study than it seemed."

http://andrewgelman.com/2016/01/13/pro-pace/
 
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Yogi

Senior Member
Messages
1,132
Bob said:
Ah, yes, that's the Cochrane group, which is so 'independent' that it includes White & co who co-wrote the protocol for the review before showing their data to themselves.
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But the Cochrane has already been published.

They have remained silent and not responded to Tuller with those 20 odd questions, the letter with 42 signatories, the meaction petition. They have not provided the data and been challenging the FOI requests.

They better not think some dodgy "independent" review done by their friends will placate us and the science community.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yogi said:
Andrew Gelman referred to it here

"This seems reasonable to me, and not in contradiction with the points that Wessely made. Indeed, when I asked Wessely what he thought of this, he replied that an independent review group in a different country had already re-analyzed some of the data and would be publishing something soon. So maybe we’re closer to convergence on this particular study than it seemed."

http://andrewgelman.com/2016/01/13/pro-pace/
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That seems to be a reference to this Norwegian Cochrane group, who are doing an individual patient data meta-analysis:

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

The group includes all three of the PACE principal investigators. Weird idea of "independent".
 
Y

Yogi

Senior Member
Messages
1,132
Sasha said:
There are two reviews. One (published) of aggregated data, and one (upcoming) of individual patient data (i.e. raw data).
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Confusing.

Are both being done by Cochrane? Any info on this?

Edit - I see this states it is the Protocol for the review. I thought it was already published as was dated 1 april 2014
 
BurnA

BurnA

Senior Member
Messages
2,087
Yogi said:
when I asked Wessely what he thought of this, he replied that an independent review group in a different country had already re-analyzed some of the data and would be publishing something soon. So maybe we’re closer to convergence on this particular study than it seemed."
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I think Wessely was doing his usual faux sincere act and Gelman fell for it.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
Sasha said:
That seems to be a reference to this Norwegian Cochrane group, who are doing an individual patient data meta-analysis:

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

The group includes all three of the PACE principal investigators. Weird idea of "independent".
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Two of the researchers not directly involved in the PACE trial have shown a constant and unfailing sense of independance:

Alison Wearden "the thing I did that I’m most proud of is I ran a large treatment trial of pragmatic rehabilitation treatment for patients with chronic fatigue syndrome, which is a quiet controversial condition and it’s poorly understood and it’s been quite difficult to treat. We successfully carried that trial out and found a treatment that improved patients’ fatigue, so that’s probably the thing that I’m most proud of." Talking about the FINE trial... http://psychologyatmanchester.edubl...wearden-by-as-level-work-experience-students/

Rona Moss-Morris The PACE trial is "a robust study" http://www.sciencemediacentre.org/e...nts-for-cfsme-and-accompanying-comment-piece/
 
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Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
MEMum said:
Has anyone approached the owners of the Lancet? Is it Elsevier? @Jonathan Edwards
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Various professionals have sent letters to the Lancet (including myself) co-ordinated by David Tuller.

I rather suspect that the key step in this process will be the review of the appeal in the Freedom of Information case in a fortnight. I am reasonably optimistic that it might rule in favour of release of data. I doubt PLOS ONE will have the guts to follow through but the pressure from Coyne is useful.
 
A

acer2000

Senior Member
Messages
818
It seems that if this trial was set up correctly from the beginning with blinded and anonymized data sets this wouldn't be an issue? They were (at one point) claiming they couldn't release the data because they didn't want to disclose identities of participants I think. Which doesn't make any sense to me. Why didn't they get consent for this stuff and organize it correctly to begin with?
 
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