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The Centre for Welfare Reform: Major breakthrough on PACE trial (August 19) (well referenced)

Messages
85
I haven't read the whole article but I zipped down to the bottom to see how long it was and right at the bottom there is a scan of a document from the SMC - bit hard to read but blimey - a major meeting on the so called 'harassment'. Makes them look a bit . . . what can I say . . . strange? What were they doing? I don't want to be rude but it seems a bit like mass hysteria to me :)
 

user9876

Senior Member
Messages
4,556
I haven't read the whole article but I zipped down to the bottom to see how long it was and right at the bottom there is a scan of a document from the SMC - bit hard to read but blimey - a major meeting on the so called 'harassment'. Makes them look a bit . . . what can I say . . . strange? What were they doing? I don't want to be rude but it seems a bit like mass hysteria to me :)
It's worth noting the MRC and sense about science (who run materials) were involved in this meeting. So it really is all trials but pace.
 
Messages
13,774
I love watching PACE and QMUL get skewered by their own words.

Wonder who is currently a part of QMUL's committee, and if we could inform them of what's going on? That info is probably public somewhere. If they need to sign off on decisions like this, and are currently only getting spin from White, a dose of reality could change things pretty quick.

Interesting that Sense About Science USA (Trevor Butterworth) are so good in supporting patients over this PACE stuff.

It's the 'USA' that's key.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
This is an incredible, foresnic report on the Tribuanl ruling, together with background and incisive analysis. Well worth a read. I will just quote the conclusion, that compares the £450 QMUL said it would cost to extract simple data for an earlier FOI request (meaning they could refuse it on cost grounds) with the £200k they spent trying to prevent the release of even less data for this one.

Troubled by the way results from the PACE trial were released, patient organisations made a joint Freedom of Information request for the results of those outcome measures laid out in the trial's protocol but not published in the trial's initial paper.[3,50,51]

The response to this stated that the results for the protocol's recovery criteria were exempt from the Freedom of Information Act as they would soon be published in an academic journal.[52] This turned out not to be true. When these results had not been published over a year later, a new FOI request was made, which QMUL refused by stating that the PACE team had not calculated the requested results and therefore "the requested data relating to the recovery rates and positive outcomes do not exist."[53] A follow-up request that the trial's pre-specified outcomes be calculated from the trial data was then denied with the justification that the cost of conducting the calculations would be more than the £450 appropriate limit laid out by the Freedom of Information Act as “there is no longer a statistician employed by the PACE trial, [so] one would need to be recruited for this operation and trained.”[54] Mr Matthees began his FOI request by explaining that he was requesting anonymised data "in order to help ease the burden of staff having to perform the required calculations themselves" after previous requests for results were turned down.[55] It is surprising that a university does not already employ a statistician able to perform the requested analyses, and disappointing that QMUL then chose to spend over £200,000 fighting against the release of anonymised data that would allow for the independent calculation of the trials pre-specified primary and recovery outcomes.
 
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user9876

Senior Member
Messages
4,556
I love watching PACE and QMUL get skewered by their own words.

Wonder who is currently a part of QMUL's committee, and if we could inform them of what's going on? That info is probably public somewhere. If they need to sign off on decisions like this, and are currently only getting spin from White, a dose of reality could change things pretty quick.



It's the 'USA' that's key.

Council members

http://www.arcs.qmul.ac.uk/governance/council/Council membership/index.html

It includes Thornton who gave evidence.

There is Prof Richard Ashcroft who is Professor of Bioethics in the School of Law:
"He has served as a member of the Gene Therapy Advisory Committee of the Department of Health, the Ethics of Research and Public Involvement Committee of the Medical Research Council and various other public and charitable bodies."

So I wonder what his view would be?

There are also external council members who may be less tied to the internal politics.

Sir Nicholas Montagu is the chairman and is also the chair of the financial onbudsman service which is meant to help consumers with banking issues. If his governance of QMUL allows such anti-patient views to persist and be funded I don't think this would reflect well on how the onbudsman would protect consumers.