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PACE trial funding: FoI requests

Discussion in 'General ME/CFS Discussion' started by AR68, Apr 27, 2018.

  1. AR68

    AR68

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    Hello,

    I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website.


    All the funders replied to my requests.


    All four named funders are below, with the donations they disclosed to me:


    The Department of Health (and Social Care)

    £200,000


    The Department for Work and Pensions

    £90,000


    The Chief Scientist Office of the Scottish Government Health Directorate

    £250,000

    (“A further £165,055 was provided to NHS Lothian for Excess Treatment Costs”)


    The Medical Research Council contributed two sums: £2,076,363 and a later £702,975.


    The MRC said: “This included the contributions from the Department for Work and Pensions (£90k), Department of Health (£134k), National
    Institute for Health Research (£66k), and Chief Scientist Office (£250k).”.


    Therefore it would appear that, on the face of it, all the named funders contributed a total of £2,779,338, the first three contributions added into the total sum that the MRC gave to the trial.


    However, this is where things get a little more complicated….


    To cross check the figures further (the MRC had more or less confirmed what the other three had told me) I contacted the people who carried out the trial - QMUL.


    QMUL firstly gave me a slightly amended figure: £2,779,362; a very small difference and one that I did not question. But, secondly, QMUL claimed that the Department of Health contributed £1,633,020.


    Now, I'm assuming that this figure of £1,633,020 is an additional sum to the £200,000 figure that the DoH told me they had contributed to the trial, via the MRC. However the DoH did not disclose this sum to me thus I have contacted the Department to ask them to confirm this undisclosed contribution.


    Therefore the monies accounted for total to about £2.8m. IF the DoH confirm what QMUL told me, that sum accounted for will be approximately £4.4m.


    I have not included the £165k for excess costs.


    As you can see, the total (unconfirmed) sum is a bit short of the often quoted £5m.


    So, why did the DoH not disclose the extra contribution of £1.6m, assuming that QMUL have told the truth?


    Is the total cost of the trial quite a bit lower than the much-quoted £5m?


    If the cost of the trial is indeed £5m, where has the other money come from?


    At no point, by the way, am I suggesting that financial impropriety has taken place, but I am curious to know more about the funding.


    One final interesting note: QMUL told me that they were unable to provide me with a final cost of the trial.


    All the FoI requests here, apart from the Chief Scientist Office: https://www.whatdotheyknow.com/user/g_ryan/requests
     
    Last edited: Apr 27, 2018
  2. CreativeB

    CreativeB

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    Could there be anonymous donors? But wouldn't their donations still need to be declared?
     
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  3. AR68

    AR68

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    Well, I don't know.

    Given that there appears to be an undisclosed payment from the DoH and QMUL, despite being handed millions for carrying out work relatively recently, are unable to provide me with a final cost for the trial, you could be forgiven for thinking there is some ambiguity in the financial data given.
     
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  4. CreativeB

    CreativeB

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    I agree. Casts doubt - makes you wonder what they might be hiding - and why.
     
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  5. alkt

    alkt Senior Member

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    uk
    its widely thought that the department of work and pensions funded it to the tune of two million pounds .I don't know where that figure originated from but it has cropped up a lot over the course of investigating pace discussions.
     
  6. AR68

    AR68

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    I've never seen anywhere near £2m mentioned in regards to the PACE trial.

    What prompted me to put in the FoIs were that when Carol Monaghan referred to the trial as being funded by the DWP in the Houses of Parliament, Caroline Dinenage (answering) clarified by stating that the DWP funded part of the trial.

    Every time I had seen a figure for the cost, it was £5m. Nobody seemed to question this, not even QMUL. I'd asked (on Twitter) whether anyone had a breakdown of the figures but nobody could point me to anything, so I started the series of FoIs.

    I've not seen anything to suggest that the DWP have given more than £90,000. I know people are very critical of the Department - myself included - but, so far, I cannot 'pin' this one on them.

    There is, of course, the question of why the Department was funding such a flawed study but that's not my mission here; it is merely to ascertain who paid and how much.

    For the immediate future, it looks like the Department of Health has more to answer.

    We might not know the full story for a long time.
     
    Last edited: May 3, 2018
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  7. denlander

    denlander

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    Did the insurance companies and disablity insurers contribute?
     
  8. denlander

    denlander

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    Did the insurance companies and disablity insurers contribute?
     
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  9. AR68

    AR68

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    OK, here's an update:

    I asked the Department of Health about the QMUL claim that the DoH contributed an extra £1.6m in funding to the PACE trial. Today the DoH gave me a reply. This is 'the bottom line' from them:

    "In addition there has been no further funding to this project or any other projects on Myalgic Encephalopathy/Chronic Fatigue
    Syndrome at Queen Mary University London. DHSC/ NIHR has not contributed a further £1,663,020 according to our records."

    So, in other words. QMUL claimed the DoH gave a further £1.6m to PACE, the DoH say they haven't (no record of it).

    https://www.whatdotheyknow.com/request/dohsc_funding_of_pace_trial#incoming-1160120
     
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  10. CreativeB

    CreativeB

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    Magic money. Just appears :woot:
     
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