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PACE trial: QMUL appeal information re hearing on 20 - 22 April (UK)

Large Donner

Senior Member
Messages
866
It does seem amazing however that QMUL can pay an expert IT witness to claim that they are incapable of anonymising data from a £5 million publicly funded study yet the irony is lost on them that they are supposed to be an elite university who are there to provide high level scientific proofs.

Surely they should not have received £5 million if they don't have the capacity to anonymise data and surely they should be paying the same IT "expert" to anonymise the data for them even if it means writing a programme to do so, which seems highly unlikely that's even necessary.
 
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Large Donner

Senior Member
Messages
866
Some "opposing" evidence: similar data was released for the sister study, the FINE study -which had an agreement on protecting patent privacy as strictly, or perhaps more so than the PACE study. Eg. they've already done it before (with no consequence), so why not now?

Identifying data, such as gender, age, location is not being requested!

The problem however is who is allowed to stand up and say this, will they stand up and say it, will they freeze or articulate it well, will their "status" have an credibility, will they have thought about having that evidence at hand for the judge.

Judges make their decision by the evidence that is put in front of them they do not go searching for evidence themselves.

All that counts in court is what is put into the court records.
 
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Invisible Woman

Senior Member
Messages
1,267
If FINE could release anonymized data why not PACE?

This data (presumably anonymized) was already shared for the Cochrane review.

Peter White has already stated, in writing, that is is possible to anonymize the data. I can't remember where he said it, but he really made Coyne's day when he did.

But I agree:
All that counts in court is what is put into the court records
 

Kati

Patient in training
Messages
5,497
It does seem amazing however that QMUL can pay an expert IT witness to claim that they are incapable of anonymising data from a £5 million publicly funded study yet the irony is lost on them that they are supposed to be an elite university who are there to provide high level scientific proofs.

Surely they should not have received £5 million if they don't have the capacity to anonymise data and surely they should be paying the same IT "expert" to anonymise the data for them even if it means writing a programme to do so, which seems highly unlikely that's even necessary.
Let's not forget that the said data was kept in an unlocked filing cabinet and some of it including patient identifying information got stolen.
 

Large Donner

Senior Member
Messages
866
If FINE could release anonymized data why not PACE?

This data (presumably anonymized) was already shared for the Cochrane review.

Peter White has already stated, in writing, that is is possible to anonymize the data. I can't remember where he said it, but he really made Coyne's day when he did.

But I agree:

Hopefully as QMUL have already been told to release this data and this is their appeal against that decision such issues as pointed out above can form part of the ongoing evidence, that is if they have previously been documented in the ongoing proceedings.

The problem really is if the FOI requester is not represented he will be having his head spun a thousand ways by the QMUL team.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
The problem really is if the FOI requester is not represented he will be having his head spun a thousand ways by the QMUL team.

I believe the hearing is over, and the FOI petitioner was a very capable individual.

As the hearing is now done, it's probably best just to wait and see and cross our fingers and trust that the tribunal will reach the right decision. Judges (generally) aren't daft. They know the difference between clever argument and substantive evidence.

There's really no point rehashing the arguments or speculating on things we weren't privy to at this stage. As Charles Shepherd mentioned above, internet content is sometimes used in evidence in these things. Let's not create hostages to fortune for any future proceedings by failing to respect these.
 
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BurnA

Senior Member
Messages
2,087
David Tuller and I were there yesterday to observe proceedings - which mainly consisted of going through a QMUL witness statement from an expert in data protection in considerable detail. This part of the proceedings covered some quite complex IT issues relating to whether the PACE trial data could be properly anonymised.

My interpretation of this comment is that the defense is based around whether data can be truly anonymised.

I wonder why IT is brought into it - is IT required for anonymising ?
Computers struggle to generate truly random no.s - does this mean no randomization can be achieved ? Of course not, humans and nature have lots of ways of generating random numbers.

I am certainly no expert on these matters but I hope any shortcomings in IT would not mean data cannot be considered anonymous.
 

user9876

Senior Member
Messages
4,556
My interpretation of this comment is that the defense is based around whether data can be truly anonymised.

I wonder why IT is brought into it - is IT required for anonymising ?
Computers struggle to generate truly random no.s - does this mean no randomization can be achieved ? Of course not, humans and nature have lots of ways of generating random numbers.

I am certainly no expert on these matters but I hope any shortcomings in IT would not mean data cannot be considered anonymous.

People looking at computer security have done a lot of work to look at privacy looking at things like joining data between different data sources to infer an identity. However, many get it wrong when they fail to take a multi-disciplinary approach often concentrating on obscure mathematics rather than what people actually want and expect. In the same way computer scientists looking at security have tended to fail in understanding threats, preferring to caricature attackers their skills and motivations rather than trying to really understand. I work in computer security but have also worked with criminologists and hence see the real lack of methodology in IT security.

My guess would be that QMUL have found someone on the extreme edge of the privacy debate who doesn't believe any information should be shared if it has ever gone close to an individual - despite the many potential benefits. I did talk to a privacy researcher a while ago who suggested the US vs UK attitudes are different.
 
Messages
14
Location
London, UK
New post today with update on the hearing and links to the public documents
https://valerieeliotsmith.com/2016/...d-matthees-tribunal-hearing-and-open-justice/

QMUL v the Information Commissioner and Matthees: Tribunal hearing and Open Justice – Part 1
APRIL 28, 2016
tags: CFS, CFS/ME, Chronic Fatigue Syndrome, First-Tier Tribunal,Freedom of Information Act, ME, ME/CFS, Myalgic Encephalomyelitis,PACE Trial, QMUL, Queen Mary University of London

This post follows on from my previous short post QMUL’s upcoming appeal against the Information Commissioner’s decision on release of PACE trial data: 20 April 2016. For a full explanation to the background and history of this case, please see my more detailed post from November 2015 Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data.

********************

Brief re-cap

In March 2014, Mr Matthees – the original requestor (OR) – sought some of the data from the controversial PACE trial, using the process set out in the English Freedom of Information Act(FOIA). This information is held by the relevant public authority, Queen Mary University of London (QMUL). QMUL refused to disclose the data.

In due course, the OR complained to the Information Commissioner (IC) who, in October 2015,ordered that the information be disclosed. QMUL appealed against the IC’s decision (download the Notice of Appeal from 002 231115 Notice of appeal); that appeal was heard by theFirst-Tier Tribunal on 20-22 April 2016 in central London. The OR asked to be joined as a party to the proceedings. He was not legally represented and did not attend the hearing but made written submissions.

[Note: the PACE trial relates to certain treatments for the condition known as “chronic fatigue syndrome” (CFS). CFS is often conflated (confusingly) with myalgic encephalomyelitis (ME) and referred to as CFS/ME or ME/CFS, to the detriment of genuine ME patients. This is the situation in many countries and has been for decades; it is the cause of significant confusion and distress to many patients worldwide. The results of the PACE trial appear to promote psychosocial treatments which many patients find either ineffective or actively harmful – hence their interest in accessing the data.]

The Tribunal

The composition of the Tribunal was as follows:

QMUL was represented by specialist QC, Timothy Pitt-Payne, instructed by solicitors Mills & Reeve LLP. The IC was represented by junior barrister Rupert Paines, instructed by solicitor for the IC.

Unfortunately, the Tribunal is not a court of record so there is no official transcript or recording of the proceedings, other than the notes taken by the Tribunal members and members of the public/press. All court proceedings are governed by the principles of Open Justice.

Open Justice (pre-hearing)

On 17 April, I contacted the Tribunal Registrar and requested the documents for this case which were publicly available. This was refused (other than the IC’s decision notice which I already had – see above). I repeated my request; again, it was refused.

On 19 April, I contacted the President of the General Regulatory Chamber (GRC) who has oversight of the Tribunals. I explained that this response was unacceptable and requested a full review of my application. He responded promptly and decided that I should be sent some of the public documents, with a further review after the hearing was concluded (download the short decision notice from 032 200416 PL Decision).

On 25 April, I contacted the GRC President again, requesting the further review and asking for details of any departure from the usual principles of Open Justice during the course of the hearing. Once I have received a reply, I will do an update in a new post – even if it is a “null result”.

I understand that the Tribunal is taking further written submissions until 29 April so it may be a while before I receive a response.

I have uploaded the remaining documents at the end of this post. However, there are others which I would expect to be made generally available as part of the hearing (subject to the redaction of any Closed Material). If nothing else is forthcoming, then I would expect reasons to be given as to why that is the case.

Open Justice (at the hearing)

I was unable to attend the hearing so I won’t speculate on what happened there. Anecdotally, I understand that QMUL’s witnesses gave oral evidence (which may have elaborated and/or expanded on their original witness statements, as often happens) and there were submissions by counsel for QMUL and the IC, in both open and closed sessions.

Unless a reporting restriction order is imposed by the judge, the general principles of Open Justice in the UK allow for full reporting of the open sessions of the proceedings. This can extend to real-time reporting on social media via electronic devices if permission is granted by the judge. Any departure from these principles should be explained in full by the judge, with reasons given in open court.

It appears that social media was being monitored – both before and during the hearing – for evidence of ME-related activity. In the case of specific PACE-related activity, this monitoring had already become apparent, as in, for example, paragraphs 22-26 of this decision notice from March 2015. Such monitoring is now common practice in litigation generally.

Once the judgment is published (sometime within the next few weeks) it will be possible to analyse both the hearing and the case in more detail.

Appeals – a reminder

Whatever the result of the hearing, any of the parties can appeal to the Upper Tribunal on a point of law only. Notice of Appeal should normally be served within 35 days of the date on which the judgment is sent to the parties.

*********************

Disclosure

I have lived with the illness ME since 1981.

I am a Visiting Scholar at the Centre for Commercial Law Studies at QMUL. I have nothing whatsoever to do with the PACE trial other than as a patient for whom no medical treatment is available, largely as a result of the trial’s purported findings.

********************

OTHER PUBLIC DOCUMENTS RECEIVED FROM THE GRC PRESIDENT SO FAR (as downloads):

IC’s response to QMUL’s Notice of appeal – 004 120116 IC Response

Original requestor’s response – 010 090216 R2 Matthees_Main_Response

Official list of hearing attendees – Hearing Attendees
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Messages
14
Location
London, UK
Thanks very much indeed for your blogpost - very helpful for those of us with zero legal knowledge to have you explain the issues to us.

What's the longest you've known a judgement take, Valerie? :nervous:
I don't monitor enough cases to be able to give you an accurate answer, Sasha. It can take several weeks - but it can be a lot less. There is no fixed time limit but it's usually around three weeks, as I said. I'm sorry I can't be more specific. I really wish I could!
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I find it quite disturbing that there appears to have been this irregularity in the legal process with regards to transparency. Transparency is a fundamental part of delivering justice and any case where transparency diverts from the norm in any way is a big concern to me. I still don't understand on what legal basis the apparent abnormalities occurred here, or why.
 

charles shepherd

Senior Member
Messages
2,239
I was at the tribunal with David Tuller - and we were told to expect a decision in about 2 weeks or so

There is obviously a delay in reaching a decision - possibly because more consideration than expected is being given what was said during the long session involving the expert witness on data protection…...