QMUL responds to UK Tribunal ordering release of PACE chronic fatigue syndrome trial data

pace trialStakeholders from around the world are reviewing the 48 page document announcing the long-awaited decision of the UK Tribunal. The decision rejects the appeal of the PACE investigators of the previous Information Commissioner’s ordering of release of the PACE data.

 A searchable, extractable PDF of the document is now available here.

I encourage you all to examine it and see how the arguments for and against data-sharing were exchanged and evaluated. Many of the arguments advanced by QMUL against routine data sharing have been previously presented by their surrogates organized by the Science Media Centre. Undoubtedly, we will see these arguments again and it’s nice to see them effectively demolished in this document. The battle for routine data-sharing is far from over.

patients say release the pace data There is much more to be said about this, but now Queen Mary University of London has issued a statement. It is reproduced below. It’s notable that it focuses on the decision having been reached in a 2:1 majority.

 The single dissenting opinion was from the lay member of the Tribunal,  who was apparently persuaded by a witness for QMUL that it just might be possible for  someone with an enormous amount of time and inordinate skills to reconstruct one or two identities of specific patients from the anonymized data.

Ross Anderson

Ross Anderson

In the majority decision, this expert witness, Ross Anderson was thoroughly demolished and criticized for his speculative arguments and conflict of interest.

The evidence of Professor Anderson that third parties could not identify participants from the information alone and that, when pressed, he said the chance of an “activist” being able to discover information that would lead to individual identification was remote. It was clear that his assessment of activist behaviour was in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder. The identity of those questioning the research, who signed an open letter or supported it, was impressive. While we accept that Professor Anderson was an expert witness, he was not a Tribunal appointed independent witness but appointed by the Appellant and clearly, in our view, had some self-interest, exaggerating his evidence and did not seem to us to be entirely impartial. What we got from him was a considerable amount of supposition and speculation with no actual evidence to support his assertions account the Respondents’ arguments

QMUL’s reaction:

As anticipated, however, QMUL is singling the likelihood that they will appeal this decision “taking into account the interests of trial participants and the research community.”

Statement: Disclosure of PACE trial data under the Freedom of Information Act

Tuesday 16 August 2016.

Statement from Queen Mary University of London (QMUL):

A Tribunal has now concluded by a 2:1 majority that certain PACE trial data should be disclosed under the Freedom of Information Act.

The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent, and that their data is only shared under obligations of strict confidentiality.

QMUL’s appeal against the Information Commissioner argued in favour of controlled and confidential access to patient data from the PACE trial. QMUL has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis.

This has been a complex case and the Tribunal’s decision is lengthy. We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community.

 

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5 thoughts on “QMUL responds to UK Tribunal ordering release of PACE chronic fatigue syndrome trial data

  1. “QMUL has shared data from the PACE trial with other researchers only when there is a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis.”

    Well, no.
    As I read this, I’d consider this a ‘flagrant délit’ in today’s scientific context – in which data secrecy and trying to control methodology applied by independent thirds are seen as the worst of the worst.

    Liked by 2 people

  2. It makes me wonder,
    1) how long will QMUL take to delay the unevitable while harming millions of patients which are told that CBT and GET are the only effective treatments available
    2) where is the Lancet? Why have they avoided any kinds of comments regarding PACE trial
    3) what about PLOS whose open access policy gave an exception to PACE trial author? When will they respond to you James? Will this judgement provide them the reassurance and assertion that they need to enforce their own rules?

    Patients are waiting. Some have been sick for decades. Many permanently harmed by PACE trial. Most of us, around the world, the 17 millions of us, have been told to exercise and to go to a shrink. Biological research have been delayed and prevented from flourishing from decades of “all in your head, childhood trauma, false illness beliefs.” It has to stop.

    Liked by 1 person

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