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Today PLOS ONE requests release of PACE data

Countrygirl

Senior Member
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5,387
Location
UK
https://forbetterscience.wordpress....tient-privacy-concerns-and-parasite-paranoia/

Update 7.03.2016. As James Coyne informed me, PLOS One has issued an editorial note demanding that the PACE trial authors release anonymised patient data. Excerpt:

“We have now carefully assessed the study and sought advice from two editorial board members, who have provided guidance on the data necessary to replicate the cost-effectiveness analyses reported in the article, and thus we have established which data we would expect the authors to share in the context of the analyses presented in this PLOS ONEarticle. We have contacted the authors to request the release of the data, which include individual patient-level data underlying tables in the article”.
 

A.B.

Senior Member
Messages
3,780
It seems that pretty much everyone agrees that the data should be shared.

Hopefully the judges will also see it this way.

Will we see a first PACE author leave the sinking ship? There has got to be some point where someone, with less personal investment into this than the others, makes a calculation and decides it's better to quit before it's too late.
 

wdb

Senior Member
Messages
1,392
Location
London
So the question now is what powers do PLOS have to enforce this ? Presumably the PACE authors will not comply without fighting it with everything they have got, it wouldn't even surprise me if they'd rather have the paper retracted than release the data.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
At least retracting the paper would have a more immediate effect.
Something about the NICE guidelines for ME not being reevaluated while PACE is seen as solid evidence and MEA trying to get the moratorium lifted.
Sorry someone else will have to clarify having trouble finding words today.
 

Stewart

Senior Member
Messages
291
Which would be a de facto admission that they have something to hide, and their reputations would take a battering.

They have painted themselves into a corner on this issue, and deserve everything that is coming.

I suspect they'll try and drag things out until the after the Information Tribunal case has been heard next month. If they win the case they'll trumpet the importance of patient confidentiality, and try to use this as cover to justify their withdrawal of the PLOS paper. If they lose the data will be made public anyway, so there'd be no point in them continuing to refuse the PLOS request.