Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[A.B.]

So they're still pretending this is about protecting patients.

 

[TiredSam]

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.

Doesn't seem very concilliatory to me. Are they just trying to save face, or are they going to carry on being stubborn and wasting everybody's time?

QMUL has shared data from the PACE trial with other researchers

At least they've stopped using the phrase "independent researchers", which is a progress of sorts I suppose, although they probably just forgot to bung "independent" in, and "other" researchers is still a bit of a stretch.

 

[user9876]

Maybe someone should let them know that the Tribunal already took those interests into account. The only rational response is to release the data, as ordered by the Tribunal

Oh, and maybe an apology for the disgusting smearing of patients, both en masse as a bunch of crazy militants, and as individuals, such as the attack on @Graham.

Note that they are only taking account of the interests of the research community and trial participants and not the overall patient population. Trial participants have a right to privacy but the data is anonymised. So this becomes an argument about their 'research community' interests vs patient interests. Patients have a right to proper information about a trial and are capable of interpreting the data.

 

[user9876]

Doesn't seem very concilliatory to me. Are they just trying to save face, or are they going to carry on being stubborn and wasting everybody's time?



At least they've stopped using the phrase "independent researchers", which is a progress of sorts I suppose, although they probably just forgot to bung "independent" in, and "other" researchers is still a bit of a stretch.

I think they need to tell us who they have shared data with (and what data). Is it just Cochrane which they admitted wasn't independent or are their others that they have shared data with that they don't want to mention?

 

[Valentijn]

Doesn't seem very concilliatory to me. Are they just trying to save face, or are they going to carry on being stubborn and wasting everybody's time?

It does sound like they might be arguing for limited academic release of the data at their discretion. But that's what they've already been doing, and they've been consistently withholding the data from bonafide researchers who aren't in their little BPS club.

If they'd been more sharey in the first place, it's possible they could have avoided the current ruling. But now the court has already ruled, and it's too late to say "whoops, we'll share it a little bit more with the right people, okay?"

 

[Chrisb]

It seems to be a failure of the procedure that if one party is insistent upon bringing spurious appeals the tribunal cannot make an order for security for costs, which has stopped many a legitimate appeal in other types of case.

 

[Gijs]

QMUL's statement:


http://www.qmul.ac.uk/media/news/items/smd/179331.html

It isn't a complex case at all.
They must release the data. It is that simple.
It seems to me that they want some extra time to see if there is something to appeal.
I wonder if the data is still there. They really have something to hide.

 

[Gijs]

It does sound like they might be arguing for limited academic release of the data at their discretion. But that's what they've already been doing, and they've been consistently withholding the data from bonafide researchers who aren't in their little BPS club.

If they'd been more sharey in the first place, it's possible they could have avoided the current ruling. But now the court has already ruled, and it's too late to say "whoops, we'll share it a little bit more with the right people, okay?"

Well said!

 

[user9876]

It does sound like they might be arguing for limited academic release of the data at their discretion. But that's what they've already been doing, and they've been consistently withholding the data from bonafide researchers who aren't in their little BPS club.

If they'd been more sharey in the first place, it's possible they could have avoided the current ruling. But now the court has already ruled, and it's too late to say "whoops, we'll share it a little bit more with the right people, okay?"

I think the idea of creating 'special people' as in bonafide researchers who are allowed to see data is a terrible idea. Patients should be allowed to see the data rather than rely on the chosen few to 'interpret'. And patients are perfectly capable of interpreting data.

As a general point data can be reasonably well anonymised. I think Anderson tried to bring in an argument that it could be matched with other data sources which is a standard argument around privacy. But that seems unlikely and would involve a lot of effort or criminal activity to illegally access health records. At the same time for clinical trials (inc PACE) there is no motivation to find out who participants are. What would anyone gain and why would they spend the effort or risk criminal charges to do so. Too many people in the computer security world sell their technologies, techniques and ideas by creating extreme threat scenarios. But often they miss the more mundane ones such as most of the threats are from cyber criminals trying to steal money or blackmail people with ransomware. They are not many highly sophisticated attackers as Anderson imagines ME patients to be in trying to reidentify trial participants (and if there were they wouldn't be checking across databases!). But the sophisticated attackers mainly work for government organizations. You don't need to be sophisticated to knock up a bit of ransomware!.

 

[worldbackwards]

Haven't got through the whole ruling (some of us are ill, you know), but the highlight of the first half is them quoting Horton's ridiculous 'hijacking the agenda' quote as if it's evidence or means anything whatsoever. Besides, that my bloody line.

 

[msf]

QMUL just proving that they really do have no shame...

 

[Snow Leopard]

If they'd been more sharey in the first place, it's possible they could have avoided the current ruling. But now the court has already ruled, and it's too late to say "whoops, we'll share it a little bit more with the right people, okay?"

Exactly. It has never been about confidentiality, it has always been about them controlling what is and isn't published, hiding that which they find inconvenient. They know they have fudged things (recovery figures) and they know they will suffer major criticism if they let others analyse the data as per the original protocol.

It's too late now anyway.

 

[Snow Leopard]

I have a question...

How possible could it be that the data that is shared is forged in order to match the conclusions of the actual paper? How can one verify that?

By trying to reproduce the statistics that have already been published.

If the figures are dramatically different, it shows that either they massaged the statistics heavily in the original papers, or they have fudged the released data when "anonymising" it. Either way, they will be caught out if they try it.

 

[Ben H]

Their statement smacks of disrespect. Its more like a response to an initial foi request, not an official court ruling. The mentality that they can still do whatever they want is perverse, under the pretence of whats best for trial participants and researchers. Its nauseating.

How low can you go QMUL?


B

 

[Snow Leopard]

How low can you go QMUL?

Hopefully not any lower. At some point you have to throw in the towel.

(Like today when I tried to repair a bicycle tube and gave up after 8 patches didn't fix it)

 

[Hutan]

(page 31):

Professor Chalder states that disclosure to the Cochrane review does not count as disclosure to independent scientists as all three of the PACE principal investigators sat on the review panel.

It's quite funny that, in trying to suggest that their previous disclosure of data to Cochrane does not set a precedent for the further release of data, Professor Chalder essentially says 'oh, but they weren't independent researchers, they were actually us'.

Funny but sad. I had previously wondered how any intelligent Cochrane reviewer could possibly read the PACE reports and not see the flaws, so this explains a lot.

I'd be interested to hear from the Cochrane Collaboration as to whether they think it is fine for an independent review of a treatment to be undertaken by the researchers that carried out the key study used to support that treatment.

Bearing in mind Cochrane's Principle 4 (Minimising bias)

through a variety of approaches such as scientific rigour, ensuring broad participation, and avoiding conflicts of interest.

 

[Deepwater]

I may be speculating wildly, but I wonder if someone else is bankrolling their legal bills? These amounts would be a drop in the ocean for the insurance industry.

I know, it is speculation but I can't help wondering the same thing. UK universities are generally pretty hard up surely far too hard up to be wasting money in this way - but financial arrangements with private industry can muddy the waters. At the risk of sounding vexatious, I wonder if an FOI request could clear this matter up. If, just if, these appeals are being funded by an undisclosed third party it is something of which any future tribunal ought to be aware. Mind you, I imagine clever accounting could obfuscate the link anyway.
Hope I don't sound like an activist....

 

[Tuha]

What I dont understand why are they behaving like this? Shame on them. What they will do when we will finally prove that this PACE misery study and GET make a big harm to the patients? They will just say sorry? But this will not be enough. The only excuse for me would be to invest all their money for ME biomedical research. And this we should demand after everything is proven.

 

[Stewart]

"This has been a complex case and the Tribunal’s decision is lengthy."

(We employed every argument we could think of, and much to our frustration the Tribunal has comprehensively rejected them all.)

"We are studying the decision carefully and considering our response, taking into account the interests of trial participants and the research community."

(We are going to go through the decision with a fine toothcomb, looking for a point of law - any point of law - we can appeal on. As we do so we will continue to pretend that we are doing this to defend the rights of trial participants and the research community, rather than desperately attempting to protect our own personal and institutional prestige.)

 

[Marky90]

How those lemons taste QMUL?

Hate to say we told you so!