johnthejack blog post, 29 June 29 2016: Using public money to keep publicly funded data from the public
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), 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 3 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 to be: