PACE trial data

QMUL has explained that the Chief Investigator of the PACE trial retired from QMUL on 31 December 2016. While QMUL remains the holder and owner of the raw data from this clinical trial, it has effectively lost the means to locate and extract it because this requires specialist knowledge. There is no longer anyone at QMUL with the ability to produce data from this trial. QMUL no longer employs anyone involved with the PACE trial.
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Wow, this is completely unbelievable. If true, this reflects very poorly on QMUL admistrative capacities and their sense of responsability concerning the trials held under their governance.

Edit: thanks a lot John, for all the efforts you're putting in to get the data.
 
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As rubbish excuses go this one is the University equivalent to the dog ate my homework. Or I left it on the train and they can't find it in lost property.
They really think everyone else is stupid, don't they?
They managed to find the data they needed quickly enough to re-analyse according to the original protocols when it was about to be released to Alem Matthees, didn't they?

Keep on keeping on @JohnTheJack they'll have to give up eventually and at the moment it seems they're hoping they can hold out longer than you.
 
JohnTheJack said:
I have received the decision from the ICO who accept that QMUL do not hold the anonymized data.

The decision is here: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2173169/fs50673373.pdf

I am intending to appeal.

I have also made a similar request to KCL.
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I thought the reason why the BBC didn't follow up on doing a programme on PACE recently was because the MRC said they had had the data independently analysed and that there was nothing wrong.

So someone must have access to it(?)

eta: might have been the SMC(?)
 
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If QMUL are now saying they can no !onger access the data, and they stick to that, could we go after them by any other means?

I'm thinking along the lines of:
1) is there some sort of charter / standards they have to uphold? Given that patients have been generous with their time, suffering and data, does the university have any obligation to them to maintain access to the data?

2) This was a publicly funded trial so surely they must be accountable to some public body - 5 million quid and now the data can't be accessed?

Who actually owns the data?
 
The complainant has also said that one of the credited authors of the PACE paper remains at QMUL and he considers could undertake the work to compile the information he had requested. He provided the name of the individual who he believes is employed by QMUL and could undertake this work.

18. QMUL advised that this individual left QMUL’s employment in March 2017. It does not believe that she would have had the expertise to be able to respond to this request in any case.
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In this case the complainant requested the internal review on 24 December 2017. The result of the internal review was not provided until after 9 March 2017.
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So, reading between the lines, it appears QMUL delayed providing an answer until everyone associated with the trial was gone.
 
Indigophoton said:
So, reading between the lines, it appears QMUL delayed providing an answer until everyone associated with the trial was gone.
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Even if everyone is gone either:

The university owns the data and therefore has some responsibility for it.
Or
The researchers own the data and thats who we should be chasing.
Or
The data, paid for out of public funds, has been passed back to the DWP

In any case the university should at the very least be able to tell us where it is and who we need to talk to. If they don't have proper provision on place for data management and handling then that in jtself should be an issue.

Of course that's just my idea of the way the world should work...which probably means it probably doesnt.:rolleyes:
 
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I understand @Indigophoton .

I rather suspect they are gaming us, but I would so love to see it backfire. It would be good to use their own devious games to undermine their situation/reputation.

I don't understand how these things work, but it seems astonishing that the establishment responsible be able to weasel their way out of taking responsibility for £5 million worth of data.
 
Worth remembering that QMUL have attempted to portray criticism of their responses to FOI requests, and ICO judgement, as evidence of how untrustworthy and unreasonable we all are.

So... QMUL spending years fighting against the release of trial data, and then after losing a tribunal judgement seeing everyone connected to the trial leave the organisation and claiming that this means no further data can be released... this sounds okay-ish... but maybe there are some problems with it as a way of managing data from a trial which has become an international scandal?
 
"lost the means to locate and extract it because this requires specialist knowledge"
"
Research at Queen Mary
Our academics undertake world-leading research in a lively and supportive research community. The results are original, informative, often surprising or questioning, and always significant – achieving impact on wider society and within specialist areas of knowledge.

We are 14th in the UK and 121st in the world
8 Nobel Prize winning staff and alumni
£137m – annual research income"

hmmmmm
 
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