In the interests of trying to be helpful, is it possible to see the FOI responses? I'd just like to be confident we are comparing apples with apples, and that the FOI released data is not something slightly different.
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PACE-gate ……. More wrongdoings? – PARTICIPANT NUMBERS seemingly just DON’T ADD UP
- Thread starter lilpink
- Start date
My 642 number was down to a silly mistake I made. Corrected post/arithmetic now, and correctly adds to 640.
Graham
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I could give you a link to an old wrinkly stroking an elderly dog.
Jenny TipsforME
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But unless I've misread this whole thread, the FOI information does not add up to 640, that is the number it should add up to. I found rereading the thread once this had clicked helped.
The phases of recruitment thing sounds like it is worth double checking. Might one Centre have given the figure at the point the trial started?
There are conceivably other explanations than fabricated data, like the query over consent. They could have based the FOI number on the number of consent forms they have. It does seem like outright fraud should have been more convincing, as in actually significant without messing around with the protocol!
But would it be possible to work out new stats without the Centre which has dodgy numbers?
Can we leave the guessing for now please? This work is carrying on out of the public eye for now. As soon as there is any more information that can be made public it will be. Thanks for the interest thus far.
But I would really (and sincerely) caution you be sure you are comparing apples with apples in your behind the scenes work, and that the FOI data you are using really is what you think it is, as well as being a complete set of what you think it is. The last thing you would want is for the PACE authors to validly correct you on an inadvertent oversight.
My worry, as evident from my other posts, is possibly not comparing apples with apples, or possibly with an incomplete set of apples. I find it hard to believe even the PACE team would lay themselves so wide open as to do what is being postulated here, and to me flags a warning that something else is being overlooked.
Jenny TipsforME
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I don't think we're pontificating, these are practical questions, but probably this shouldn't be a public discussion until the facts are confirmed.
Yes, but "pontificating" - I object to that.
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Update on the PACE Trial participant numbers.
It seems that the person who made the FOI requests for the participant numbers for each centre from each individual NHS Trust involved in the PACE Trial was provided with incorrect information by the Barts Health NHS Trust. This Trust returned the figure of 67 for the Bart's PACE Trial centre which now appears to be wrong.
A FOI request to QMUL for the complete set of participant numbers eventually yielded the full set of figures. I say eventually because QMUL at first refused to provide the information, saying that giving the numbers out could mean that Trial participants could then potentially be identified from information in the public domain, so this would be a breach the first data protection principle. They released the information after a complaint was made to the ICO and the ICO contacted them. The figures QMUL then provided were as follows:
Barts - 135
Edinburgh - 113
Kings - 110
Oxford - 108
Royal Free - 111
Bristol - 63
[TOTAL: 640]
When Barts Health NHS Trust was subsequently informed that their participant number appeared to be wrong and were asked to supply the correct information, they replied saying that they had obtained the information from the Trust’s and Queen Mary University of London’s Joint Research Management Office. How odd. Why would they give out the wrong number?
NB Barts Health NHS Trust also didn’t respond within the 20 days to a request for the participant numbers for the King’s Centre. (See below for why this FOI request was made). For both of these centre numbers (i.e. for the Bart’s number and the King’s number) the requester was eventually told by the Barts Health NHS Trust to approach QMUL.
The participant numbers obtained by FOI requests to the separate NHS Trusts were as follows:
Barts – 67 (an email was sent to Barts Health NHS Trust to check that this was the total from both Bart’s services and their reply suggested it was)
Edinburgh – 113 (obtained on appeal – they found that a member of staff was able to access an online database)
King’s – strange ‘zero’ response (see below)
Oxford – 108
Royal Free – 111
Bristol – 74 (with 4 lost to follow up)
The trials and tribulations associated with requesting the King’s Centre number
When the FOI request was first made to King's College Hospital NHS Foundation Trust they replied saying that, although they held the data they weren’t the data controllers ‘for the majority of it’ so to try Bart’s. An appeal/request for review was made to them and they responded saying that they may be able to access the study if the requester could supply a REC/IRAS number for the PACE Trial. The REC number was provided. Their response to this was to say that they had accessed the study and that King's College Hospital was never opened as a site to this trial so zero patients were recruited at King’s! When a second review was requested, pointing out that the participant newsletters indicated that King’s did recruit to the PACE trial, they replied saying that they didn’t hold the required data and to go to Bart’s. But since in one email they had said that the patients would have been recruited at the Maudlsey Hospital, not King’s, a request was first made to the South London and Maudsley NHS Foundation Trust. They too replied saying that they didn’t have the information and to go to the researchers.
The request for the King’s participant number was made to Bart’s at the end of June. They finally responded to this request on 8th September, saying that the requester should approach QMUL for the information.
It seems that the person who made the FOI requests for the participant numbers for each centre from each individual NHS Trust involved in the PACE Trial was provided with incorrect information by the Barts Health NHS Trust. This Trust returned the figure of 67 for the Bart's PACE Trial centre which now appears to be wrong.
A FOI request to QMUL for the complete set of participant numbers eventually yielded the full set of figures. I say eventually because QMUL at first refused to provide the information, saying that giving the numbers out could mean that Trial participants could then potentially be identified from information in the public domain, so this would be a breach the first data protection principle. They released the information after a complaint was made to the ICO and the ICO contacted them. The figures QMUL then provided were as follows:
Barts - 135
Edinburgh - 113
Kings - 110
Oxford - 108
Royal Free - 111
Bristol - 63
[TOTAL: 640]
When Barts Health NHS Trust was subsequently informed that their participant number appeared to be wrong and were asked to supply the correct information, they replied saying that they had obtained the information from the Trust’s and Queen Mary University of London’s Joint Research Management Office. How odd. Why would they give out the wrong number?
NB Barts Health NHS Trust also didn’t respond within the 20 days to a request for the participant numbers for the King’s Centre. (See below for why this FOI request was made). For both of these centre numbers (i.e. for the Bart’s number and the King’s number) the requester was eventually told by the Barts Health NHS Trust to approach QMUL.
The participant numbers obtained by FOI requests to the separate NHS Trusts were as follows:
Barts – 67 (an email was sent to Barts Health NHS Trust to check that this was the total from both Bart’s services and their reply suggested it was)
Edinburgh – 113 (obtained on appeal – they found that a member of staff was able to access an online database)
King’s – strange ‘zero’ response (see below)
Oxford – 108
Royal Free – 111
Bristol – 74 (with 4 lost to follow up)
The trials and tribulations associated with requesting the King’s Centre number
When the FOI request was first made to King's College Hospital NHS Foundation Trust they replied saying that, although they held the data they weren’t the data controllers ‘for the majority of it’ so to try Bart’s. An appeal/request for review was made to them and they responded saying that they may be able to access the study if the requester could supply a REC/IRAS number for the PACE Trial. The REC number was provided. Their response to this was to say that they had accessed the study and that King's College Hospital was never opened as a site to this trial so zero patients were recruited at King’s! When a second review was requested, pointing out that the participant newsletters indicated that King’s did recruit to the PACE trial, they replied saying that they didn’t hold the required data and to go to Bart’s. But since in one email they had said that the patients would have been recruited at the Maudlsey Hospital, not King’s, a request was first made to the South London and Maudsley NHS Foundation Trust. They too replied saying that they didn’t have the information and to go to the researchers.
The request for the King’s participant number was made to Bart’s at the end of June. They finally responded to this request on 8th September, saying that the requester should approach QMUL for the information.
Jenny TipsforME
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@lilpink do you accept the QMUL figures as accurate?
Who ever knows? But if that's the game they're playing I don't think we can do anything other than accept those figures. Unless of course people on the ground at the participating centres have an alternative viewpoint. The prevarication employed by the centres (not all, but some) to not release such simple data is peculiar. But as a patient population I think we're used to such modi operandi aren't we?
Jenny TipsforME
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Yes I think we're treated with automatic suspicion.
Daisymay
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Quite, which of the figures are right?
Same goes for all the data they provide?
Jenny TipsforME
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In general I tend to default to the view that incompetence and error is far more common than conspiracy, but with ME politics you never quite know.
It's reciprocated!
Btw: this paper - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2984352/ supports QMUL's figure that Bart's contributed 135 participants to the PACE Trial. (It's far easier to find when you know what you're looking for)
Do we think that those involved in the above 2010 paper, (now who would that be?), thought that that they'd breached the first data protection principle by releasing this participant number, potentially allowing their patients to be re-identified? Do we think that weighed heavy on QMUL minds?
And it still begs the question - why DID the [Barts Health NHS] Trust’s and Queen Mary University of London’s Joint Research Management Office give out the apparently wrong figure of 67 in response to the FOI request? It doesn't even match any of the figures in the above paper. Did they pluck it out of thin air? Would they have deliberately given out the wrong figure? Any guesses?
Do we think that those involved in the above 2010 paper, (now who would that be?), thought that that they'd breached the first data protection principle by releasing this participant number, potentially allowing their patients to be re-identified? Do we think that weighed heavy on QMUL minds?
And it still begs the question - why DID the [Barts Health NHS] Trust’s and Queen Mary University of London’s Joint Research Management Office give out the apparently wrong figure of 67 in response to the FOI request? It doesn't even match any of the figures in the above paper. Did they pluck it out of thin air? Would they have deliberately given out the wrong figure? Any guesses?