Using public money to keep publicly funded data from the public

Update. Some have questioned whether QMUL had to pay VAT, or whether the VAT could be reclaimed by QMUL. I have done a further FOIA request to clarify and received a response on 14/09/16:

‘VAT at 20% was paid on these amounts.’

 

After publication of the PACE trial comparing different interventions (Cognitive Behavioural Therapy [CBT], Graded Exercise Therapy [GET], Adaptive Pacing Therapy and Specialist Medical Care) for ME/CFS, patients questioned the claims for the effectiveness of CBT and GE. These criticisms have been reported by David Tuller and James Coyne (a series on his blog here), and supported in her own look at the trial by Rebecca Goldin for the website jointly run by the American Statistical Association and Sense About Science America.

A number of Freedom of Information requests were made for the data in order to test the conclusions drawn by the Principal Investigators. Many of the patients’ requests were rejected, deemed vexatious, by the responsible research centre, Queen Mary University of London (QMUL).  In one instance, however, Alem Matthees successfully complained to the Information Commissioner (IC), and QMUL were ordered to release the data Matthees had requested.

QMUL appealed the IC’s decision and a hearing of the First-Tier Tribunal (Information Rights) was held in April this year.

Valerie Eliot Smith, a qualified barrister, has done a series of blogs on the hearing and I am grateful to her for information used here. On her website a number of downloads are available, including one which lists the attendees (bottom of page here).

Those at the Tribunal for QMUL include: a QC, Timothy Pitt-Payne; a solicitor, Edward Hadcock; two assistant solicitors, Alison Williams Mills and Gary Attle; four witnesses, Peter White (QMUL), Steve Thornton (QMUL), Trudie Chalder (KCL) and Ross Anderson (Cambridge); and two observers, Jane Pallant (Deputy Academic Registrar) and Paul Smallcombe (FOI Officer).

Hiring a QC for three days does not come cheap. I made an FOI request to QMUL to discover exactly how much the hearing had cost and have now received a reply.

It is claimed that the attendance of all those witnesses and any preparation involved for the Tribunal cost the University nothing. Presumably Anderson covered his own travel costs and the attendance at and preparation for the hearing by White and the others were considered part of normal work duties.

QMUL has said how much they paid in legal fees:

Mills & Reeve LLP: £149,482.30 ex VAT
Timothy Pitt-Payne QC: £48,320.00 ex VAT
Disbursements/expenses (Mills & Reeve LLP): £6,985.43 ex VAT

VAT is charged at 20% on legal fees. I make the total amount of public money QMUL has so far spent to keep data secret:

£245,745.27

 

Screenshot of email from QMUL:

https://postimg.org/image/qru6r5jx3/

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26 thoughts on “Using public money to keep publicly funded data from the public

  1. I have been meaning for some time to write to the National Auditor General, Amyas Morse, to investigate the value for money, waste, and fraud, that goes on in government sponsored medical research. PACE is just the tip of the iceberg: there have been regular complaints about this even in the BMJ in the last few years. I started to collect examples and links to high level editorial pieces, but have been too ill to follow it through.

    It seems to me that what you have produced here would be a good introduction to the problem for the NAO to begin an inquiry with. There are, of course, many more cases, as we regularly hear from All Trials, Retraction Watch, and many other sources.

    The MRC ought to take on the functions of seeing research is properly carried out and audited, but it seems clear that they rarely do, and seem oblivious to all the evidence piling up, and the web discussions on the subject. The NAO, on the other hand, seems very good at taking government departments to task on their failure to keep track of spending, and takes on a surprisingly wide number of topics (I get press releases from them most days, and they are always impressive.). They are the one gov department that really seems to do a good job, and enjoy doing it. I think you really should write to Morse and get him to launch an investigation into the cost of research fraud and failure of accountability and reporting of results.

    http://www.nao.org.uk/contact-us/

    Liked by 2 people

      1. Hi John,

        I wrote to both NAO and ONS last night after reading the ONS’ latest report on avoidable deaths. I have asked them to do a further assessment and report on avoidable lost years of useful life due to the NHS leaving the long term sick to rot instead of setting up the necessary services to make accurate diagnosis and possible treatment.

        I have suggested that a determined effort at applying concerted medical attention to the chronically ill would be much better value for money and much more likely to succeed than continuous threats from the likes of Atos and the media, that are all we get at the moment.

        I mentioned in passing that the situation was not helped by poor quality psychological research which increased the number of the misdiagnosed and dumped by the system, but I left the details for a separate investigation.

        I had acknowledgements straight away this morning, so it was well worth the effort.

        Liked by 1 person

  2. Don’t forget that White, Thornton, Chalder, Anderson, Pallant and Smallcombe are all working for universities and paid for by tax payers so there time has cost money. I suspect there is a considerable cost for several days work for 4 professors.

    Also the MRC sent a witness Dr Frances Rawle who is another public employee who I assume was on QMULs side but is not listed on any side in Valarie’s document. The MRC and especially Rawle have an interest in not having data published as they failed to act on initial complaints and Rawle (as head of governance) supported Pace in outcome switching. Something that the MRC should be very concerned about.

    Liked by 2 people

  3. John – thank you so much for doing this. It was something I was winding myself up to do so I’m very glad that you’ve already done it. That figure is alarming (although about what I would have expected) – and, of course, it could increase even further if there is an appeal in due course.

    Liked by 3 people

  4. A quarter of a million…Remarkable!

    Even if the witnesses cost nothing, there were no expenses, unless those people were on unpaid leave then clearly there is a cost.

    Liked by 1 person

  5. The FOIA request in question was only submitted because QMUL failed to publish the PACE Trial outcomes as defined in the original published protocol and refused an earlier FOIA request for those outcomes (QMUL claimed that providing those figures would cost more than 450 pounds and therefore exempt from the FOIA). Now they have spent 245,000 pounds on a Tribunal hearing, not including “the attendance of all those witnesses and any preparation involved for the Tribunal”. Perhaps this is a lesson to any researchers who engage in questionable outcome switching using public funding?

    Liked by 1 person

  6. It may also be worth pointing out that QMUL chose to have a court hearing. They had the choice of a paper hearing by mail/e-mail or a court hearing in person. A paper hearing would have cost less, but not nothing, as the solicitors (and university staff?) were involved with the earlier Grounds of Appeal paperwork etc.

    Liked by 1 person

  7. Paying the salaries of White et al to attend hearings is money well spent – it means they have less time to promote their harmful GET and CBT “cures”. Of course, it will be even better when they are forced to account for their actions in a court of law. The tobacco industry hoped their scientific fraud would protect them forever. We all know how that turned out.

    I’m sure the disability insurers consider that 1/4 million pounds is a very small investment to ensure the continued classification of M.E. as a mental illness, If they ever have to start paying lifetime benefits, it will cost them billions.

    Like

    1. Yes. This was the appeal. This may or may not be the entire tab as cognitive issues are stopping me from processing this blog let alone the entire PACE trial FOIA process.

      Like

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