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QMUL spent £250,000 in legal fees to prevent the release of the PACE trial data

user9876

Senior Member
Messages
4,556
I think their primary justification might be that they were allegedly the alleged interests of the trial participants.

The QMUL council has been informed about what is happening
http://www.arcs.qmul.ac.uk/governance/council/committees/committee-papers/05-04-2016/178015.pdf

And the minutes state
QMUL was appealing to the First Tier Tribunal against a decision by the
Information Commissioner’s Office to require QMUL to disclose certain anonymous data in relation to a clinical study known as the PACE Trial. The
study had sought to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue
syndrome (CFS), also known as myalgic encephalomyelitis (ME). There was a risk that patients would be less willing to participate in future clinical
trials at QMUL and across the sector if patient data were released.

The argument they put forward to their own governing body is incoherent in that the publicity around PACE and the way it has been run and trial results suppressed is far more likely to stop patients taking part in clinical trials. Also it is now a normal practice to have open data. Obviously the university of Manchester took a different view. It just shows that their is no effective governance for universities.

It is part of the principles report which shows that a decision to suppress trial data and spend huge amounts comes from the highest level.

Maybe they worry if the truth gets out no patient would ever take part in a QMUL trial ever again.
 
Messages
3,263
It might not be exactly the same in the UK, but here in the colonies, Universities are more like corporations (that run for no profit) than government departments. They get a fixed amount of funding from the Government (usually calculated based on student numbers and research productivity), but then they're on their own: they always have to raise funds elsewhere (student fees, research grants, investments). Like companies, Uni's can carry over a deficit from one year to the next, but eventually, have to balance their books or it will all turn to s**t.

So these legal fees would presumably come out of the QMUL annual budget. QMUL will have to cover those costs itself - maybe it has a surplus of funds this year. Or maybe it will have to balance its books either by cutting costs (staff etc.) or increasing revenue (more fees, bigger grants, etc.).

The revenue brought into QMUL by PACE is almost definitely less than the legal costs it has incurred, so its been a bit of an all round loser for them.
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
The revenue brought into QMUL by PACE is almost definitely less than the legal costs it has incurred, so its been a bit of an all round loser for them.

No one here should celebrate QMUL 'losing' in that way. It will just help them to argue that vexatious PWME are the reason they had 'no choice' but to defend themselves blah blah. If anyone calls them on this (like their own student body), they'll blame us. Let's not give them any ammunition.

The fact that it was their choice to spend a ton of money on upmarket lawyers to oppose a petitioner with nothing like those resources is neither here nor there — spin will triumph over reason.
 
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GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
Was it worth it? Do we know the outcome of the appeal yet? Where I live, it's July 1.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The question about whether UK universities are public or private bodies is a bit blurry and ambiguous. They are run independently, mostly as 'exempt' charities regulated by the Higher Education Funding Council for England rather than the charity commission. The ambiguity comes about for a variety of reasons e.g. because some of them were established by an Act of Parliament; and many of them were established by a 'Royal Charter'; and because they receive much of their funding from the state; and because they are bound by rules and regulations that are usually limited to public bodies. They also have to be approved by the state before they can issue degrees. There are many differences in the status of individual universities for historic reasons and because of the different regulations in England, Wales and Scotland etc.

QMUL was established by an Act of Parliament and a Royal Charter, and it is an 'exempt' charity which means it is regulated by the Higher Education Funding Council England (HEFCE) rather than the charity commission.

QMUL said:
Statement of compliance with Charity Commission guidance and the 'public interest' test

Queen Mary University of London (QMUL) is an exempt charity regulated by the Higher Education Funding Council England (HEFCE). Its Trustees have regard to the Charity Commission's guidance on public benefit and the public interest underpins all aspects of QMUL's mission and activities as a higher education institution. As stated in the Charter:

'The Objects of QMUL shall be to promote, for the public benefit, education, research and scholarship, to provide courses and instruction leading to degrees and other academic awards of the University of London and/or QMUL and to promote and undertake research, and to disseminate the results of such research.'

Public benefit is embedded in our strategic aims and objectives, and reporting of progress towards achieving these is contained in the Financial and Operating Review. Specific information is provided within QMUL's Financial Statements about how the institution delivers public benefit in all its activities.

More about QMUL's status, here:
http://www.arcs.qmul.ac.uk/governance/council/Charity/92919.html

Some more info about the status of universities, here:
https://en.m.wikipedia.org/wiki/Universities_in_the_United_Kingdom#Legal_Status
https://www.theguardian.com/education/2006/jun/20/highereducation.comment
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
When I was reading through QMUL's website I came across the following information, which I thought I'd make a note of, in case it might be helpful for me, personally, in the future...

QMUL said:
Examples of QMUL’s pioneering contribution to education outreach and partnership include:
  1. [...]
  2. [...]
  3. [...]
  4. the Queen Mary Legal Advice Centre, which provides free legal advice to members of the public, students and QMUL staff; The Centre operates for the mutual benefit of clients and students and is committed to enabling students to learn from practical experience.

It's always useful to know where to find legal advice.

But, then I thought... wouldn't it be ironic if they could provide legal advice about how to challenge QMUL's actions!
 

snowathlete

Senior Member
Messages
5,374
Location
UK
The QMUL council has been informed about what is happening
http://www.arcs.qmul.ac.uk/governance/council/committees/committee-papers/05-04-2016/178015.pdf

And the minutes state


The argument they put forward to their own governing body is incoherent in that the publicity around PACE and the way it has been run and trial results suppressed is far more likely to stop patients taking part in clinical trials. Also it is now a normal practice to have open data. Obviously the university of Manchester took a different view. It just shows that their is no effective governance for universities.

It is part of the principles report which shows that a decision to suppress trial data and spend huge amounts comes from the highest level.

Maybe they worry if the truth gets out no patient would ever take part in a QMUL trial ever again.

So the story they get told is not at all the full story, one that is inconsistent with QMUL's actual appeal; it's a version which first refers to the data as anonymous data (which is accurate of course, but actually officially disputed by QMUL) and they admit here that it's about the damage the release could do to their trial participation rates (something the IC said in his decision that does not trump the rights of the public to have access to the data). They've presented the reasons that are most likely to gain support from the QMUL council, not the full story at all.

How can they claim it is not anonymous data at tribunal while telling the QMUL council that it is?
 

Dolphin

Senior Member
Messages
17,567
FOI response now up:
https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/
https://postimg.org/image/qru6r5jx3/
QMUL.jpg
 

Yogi

Senior Member
Messages
1,132
Thanks @JohntheJack for doing this.

Does anyone know what the total legal fees have been for the PACE trial since inception and whether a FOI has been done for that?

I believe Horton said that £750k had been spent in legal fees by 2011

"And indeed the study costs $4 million pounds to undertake but the allegations and the freedom of information requests and the legal fees that have been wrapped up over the years because of these vexatious claims has added another 750,000 pounds of taxpayers’ money to the conduct of this study."


http://www.meassociation.org.uk/201...n-abc-national-radio-australia-18-april-2011/

What is taxpayers money defined as QMUL or other governement dept?

Who is paying for this - is it QMUL or is QMUL paying it and being reimbursed by us the taxpayer?

There is good comment by spamletblog:

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
 
Messages
13,774
I think that 750k figure from Horton was probably spun, and related largely to the patient who requested that their data be destroyed, or their trouble recruiting patients, rather than the direct cost of dealing with FOIs.

I do wonder if important outside groups (MRC, etc?) viewed the desire to unspin PACE data as an anti-science attack by dangerous patients, so chose to provide additional science funding to PACE and QMUL. Now more and more researchers are recognising patients were right, the release of data that illustrates the legitimate concerns of patients could be even more humiliating for the UK research community than we'd thought. I suspect that there are a lot of deeply incriminating documents around PACE waiting to come out.
 
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user9876

Senior Member
Messages
4,556
So the story they get told is not at all the full story, one that is inconsistent with QMUL's actual appeal; it's a version which first refers to the data as anonymous data (which is accurate of course, but actually officially disputed by QMUL) and they admit here that it's about the damage the release could do to their trial participation rates (something the IC said in his decision that does not trump the rights of the public to have access to the data). They've presented the reasons that are most likely to gain support from the QMUL council, not the full story at all.

How can they claim it is not anonymous data at tribunal while telling the QMUL council that it is?

To me it shows that the management of QMUL is not functioning properly - where there is a clear issue it is up to management to understand the issues and ask the right questions and investigate. But they seem to have taken what they were told at face value and spent a lot of money and probably suffer reputational damage as a consequence. I think it is time for Prof Simon Gaskell to resign as head of QMUL. Not because of PACE as such but because of the poor governance it has exposed.
 

user9876

Senior Member
Messages
4,556
I think that 750k figure from Horton was probably spun, and related largely to the patient who requested that their data be destroyed, rather than the direct cost of dealing with FOIs.

I do wonder if important outside groups (MRC, etc?) viewed the desire to unspin PACE data as an anti-science attack by dangerous patients, so chose to provide additional science to PACE and QMUL. Now more and more researchers are recognising patients were right, the release of data that illustrates the legitimate concerns of patients could be even more humiliating for the UK research community than we'd thought. I suspect that there are a lot of deeply incriminating documents around PACE waiting to come out.

I think there is an attitude with in the UK that the unwashed masses (including patients) have no right interfering, reading or commenting on science. Hence any comments by patients are considered as anti-science because they don't come from those in academic jobs. Recently I think we have seen that attitude extended in the uk version of open data where data is only shared with those in privileged academic jobs (who for some undisclosed reasons are deemed trustable and able to keep data secure).

In terms of the MRC we shouldn't forget that the outcome switching was raised with them when the first paper was published and they failed to investigate so I suspect they or rather their head of governance who was a witness at this hearing have an interest in avoiding embarrassment and not having data out in the open and showing the affect of outcome switching,
 

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
The university presumably has to justify its spending and I'd be horrified if it had actually used taxpayers' money for this. I'd have thought it would have been against its own regulations and/or the advice of its own trustees.

Maybe I'm wrong, but it seems that for now it's an assumption that this was taxpayers' money rather than an established fact (although I can't concentrate well enough at the moment to read John the Jack's blog properly).

The FOI request was for how much QMUL paid, not how much the trial cost.