PACE trial TSC and TMG minutes ordered released

Well done and thanks so much @JohnTheJack !

A couple of questions:

  1. Does all this information gathering cost anything in terms of equipment (from stamps to paper to computer stuff) that I (we) can assist in by donating to? (Please don't be a martyr to bearing costs)
  2. Do you have people who can assist in any way? Would it be helpful to have any volunteers?

Just asking, as it seems to me that while verbal and written appreciation is good, sometimes we an help out too, and give a little mutual aid. I'm also asking because sometimes people feel awkward asking for help (in whatever way), especially asking groups like us.
 
dave30th said:
Presumably they have 20 or 40 days to appeal to the First-Tier Tribunal, I would assume. But QMUL would have to want to go through the public ridicule again over spending money on this, and that seems unlikely to me.
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Yes and it would surely be even harder for them to justify not releasing this info and would look so bad, as it will if it is heavily redacted.
 
A question based on ignorance of how this works. How can we be sure they are not over-selective about what they release? How does the process ensure that some data is not simply ignored? (As compared to data that is redacted, and thereby not ignored).
 
Barry said:
A question based on ignorance of how this works. How can we be sure they are not over-selective about what they release? How does the process ensure that some data is not simply ignored? (As compared to data that is redacted, and thereby not ignored).
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We can't be sure, but to do that runs the risk of anything they hide being revealed later. All it would take would be an anonymous tip off to ruin their concealment. They would have to be 100% sure that anyone with knowledge of the matter would be o.k. with concealment. As people at their own institution are willing to doubt their judgement, this is a big risk. They could even be exposed by people angling to replace them. It wouldn't need someone with a pure motive.

It would also by necessity have to involve someone lower down the pecking order who would be doing the work of preparing the release in a conspiracy. Maybe people who haven't had quite the same pay rises as the people at the top, and who rely on a steady income. Maybe people who are tired of being treated as the 'get me some coffee' lacky, or being looked at in a certain way. People who don't have as much incentive to break the law. People with pensions on the line, etc. Risky gamble. ;)
 
Barry said:
How can we be sure they are not over-selective about what they release? How does the process ensure that some data is not simply ignored? (As compared to data that is redacted, and thereby not ignored).
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It would be a serious ethical violation and probably a legal one as well, to alter or deliberately omit things. Basically the consequences would stop them from doing it, similar to why they won't tell a lie under oath. It would be an end of their careers.
 
A question asked out of ignorance:
Are there rules about what sort of information can be redacted from documents the ICO has ordered to be released?
And does someone from the ICO check the original against the redacted document to check compliance with such a rule?
 
Luther Blissett said:
Well done and thanks so much @JohnTheJack !

A couple of questions:

  1. Does all this information gathering cost anything in terms of equipment (from stamps to paper to computer stuff) that I (we) can assist in by donating to? (Please don't be a martyr to bearing costs)
  2. Do you have people who can assist in any way? Would it be helpful to have any volunteers?

Just asking, as it seems to me that while verbal and written appreciation is good, sometimes we an help out too, and give a little mutual aid. I'm also asking because sometimes people feel awkward asking for help (in whatever way), especially asking groups like us.
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Thanks for your concern, Luther (hehe).

1. So far no it hasn't. I have been doing everything online. The PACE data appeal, which I have been working on this week, will need to go through the post, but printing and mailing should be <£10 so manageable. If it starts requiring massive amounts of printing and mailing, I may return and let you all know. I'm hoping it won't be necessary, though.
2. No. I kind of like working at my own pace and will sometimes sit on something for months doing a bit here and there as th illness permits. When I need specific help, I do shout out, and shall remember to do so.

I do appreciate and welcome your concern.
 
Although [JohntheJack] was aware that the Commissioner had previously found the exact same information was exempt under section 36, a decision upheld at Tribunal (Mitchell v Information Commissioner and QMUL 22 August 2073 EAl201310019), he argued that in the intervening period new doubt had been cast on the rigour of the trial. He also argued that the submissions provided by the university to the Commissioner and the Tribunal in the earlier case should be viewed as unreliable in light of, what he believed to be, undeclared conflicts of interest. He considered that together with the passage of time these two points significantly shifted the balance of the public interest so that it now favoured disclosing the information
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Wow, well done at @JohnTheJack in getting a Tribunal decision effectively over-ruled to get this info:trophy@
 
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https://www.dropbox.com/s/xbos0l3k6ylr0ew/ICO decision minutes.pdf?dl=0
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Great that we'll (hopefully) soon be able to look at those minutes. I wonder if they will reveal anything about the changes to the recovery criteria. If they don't, that will be big news in itself. What's not discussed in the minutes may be as interesting as what is.

Some quick notes on the judgement - was a bit of a roller-coaster to read imo.

Another reminder to everyone that if ever feeling frustrated and angry about something, before hitting 'post reply' it's worth thinking about whether it could be used by QMUL to try to present PACE critics as unreasonable (QMUL actually focussed on a PR thread where I was by far the most militant so do as I say, not as I do... *grumble* *grumble* I had good reason for being pissed off). They also seemed to be trying to use criticism of the ICO and any Tribunal judgemenets against us... sorry ICOers but sometimes you get things wrong. This time the ICO found that the disparaging comments were not serious enough to affect their judgement, it's always possible that another officer could decide differently:

"In particular the university provided a link to a discussion on that forum which commented on the Tribunal's decision to uphold the refusal of the earlier request for these minutes. Many of the comments are disparaging of both the judgement and the research itself. The Commissioner considers that although anyone unaccustomed to facing a disgruntled audience is likely to find some of the comments unpleasant, the dissatisfaction is not expressed in such strong terms that it would cause those against who it is directed at any real concern."

There were some annoying bits in the judgement, where it really seemed that the ICO had just gone with QMUL's narrative, then there were other bits which I thought strongly stood up to arguments from QMUL that I thought might be more persuasive. There are a lot of complicated issues related to PACE, and I'm not sure how much we should expect an officer at the ICO to properly understand them all.

I think that presenting this as a divide over whether CFS should be viewed and treated as a physical or psychiatric condition is a real distraction from the central issue of the quality of the PACE trial as a piece of research, and the danger of it's purported results misleading doctors and patients. I realise that this is a difficult topic to summarise but I felt like the ICO summary really promoted QMUL's narrative on this (although I've not seen Peter's submissions, so maybe he agreed with it, in which case I can't blame the ICO for going with it):

The causes, and therefore the treatment, of chronic fatigue syndrome is a contentious area of science. The Commissioner understands that there are those who believe it has a physical cause and therefore should be treated as such, while another school of thought approaches its treatment from a psychiatric perspective. The two treatments found by the trial to be most effective are psychiatric therapies. Some patients and patient groups maintain that by ignoring the physical cause of the condition, these two therapies can result in patients suffering adverse effects. The rigour of the methodology employed in the trial and its results were therefore challenged, the validity of those challenges is debated as is the extent to which trial's findings are generally accepted within the scientific and medical community. It is fair to say however that the trial attracted some controversy.
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Actually, I may have been a bit unfair on the ICO on my first reading, as when I went to find others bit like that which had annoyed me, it was the ICO giving QMUL's opinion, not their own: "This is based on the university's belief that there exists a group of patient activists who feel so strongly that research into chronic fatigue syndrome should focus solely on it being a physical illness that they would seek to discredit any work which takes a psychiatric approach."

(18) "The treatment of chronic fatigue syndrome is a contentious area of science and the university considers that those involved in this area of work have concerns that they could become the target of adverse criticism in the event their research was not accepted by those who favour the condition being treated purely as a physical illness."

There were still parts that made me think that the ICO officer had quite different values to myself, eg (31): "However she has found no reason to question the integrity of the researchers or those involved in the steering committee." I think that everyone's integrity should be questioned, particularly if they hold positions of power or authority. I'm not sure if she had the problems with PACE's recovery claims explained to her, but it's pretty difficult to understand them and not think that someone has acted with less than impressive integrity.

The judgement made me think that need to remember that word of the replication crisis, and other problems in academic research, might not have spread to the ICO. Some parts of this judgement seemed founded in some slightly old fashioned ideas about academia. I need to remember that most people in the UK will not be aware of a lot of the issues we spend a lot of time discussing.

Paragraph 17 is of interest for stating that the Principal for QMUL was familiar with the issues surrounding PACE. There's a lot from this person, and it really seems to indicate that the QMUL administration are not doing their jobs properly.

In paragraph 24: "The university has argued that the criticism is unmerited and that the trial is not controversial among the majority of scientists in the field, or indeed experts in clinical trials." Wow. I think this is really damaging for those at the top of QMUL. They've committed themselves to defending PACE, but it's clear that key claims from the PACE researchers are indefensible. I was thinking that they must have realised by now that they should be trying to find a way to retreat on this topic, but even their new Principal is now completely committed.

It's a real shame to lose information relating to the patient representative body.

QMUL makes use of that spun BMJ Hawkes piece, and it seems to impress the ICO somewhat. I think it could be time to focus on trying to get some of the problems with that corrected. There are a few problems at the BMJ, and they don't seem keen on correcting any of them. It will be interesting to see what happens about SMILE not being prospectively registered.
 
I liked the decision much more on a second reading.
It is worth remembering this is a legal process and the ICO does not want to be appealed to the IT. They have to show they're being reasonable and have considered all the points made.
It is disappointing the AfME contributions will be redacted.
I could try to appeal some of the anonymization and other redactions, but I think that is not worth the bother.
The ICO is well aware of the replication crisis. It was covered in the thousands of words and dozens of footnotes/references I provided.
 
Esther12 said:
There were still parts that made me think that the ICO officer had quite different values to myself, eg (31): "However she has found no reason to question the integrity of the researchers or those involved in the steering committee." I think that everyone's integrity should be questioned, particularly if they hold positions of power or authority. I'm not sure if she had the problems with PACE's recovery claims explained to her, but it's pretty difficult to understand them and not think that someone has acted with less than impressive integrity.
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I took that more as a comment that it is not the ICO's job to judge the integrity of the researchers and that comments made in the judgement were not intended to do that.

I tend to agree that people in authority should have their judgement and integrity challenged. But I think the ICO shouldn't be judging people but to look at whether there is a case to release data to ensure that people can be held to account. In terms of the claims I think it was sufficient to see that concern was wide spread and also expressed by experts.
 
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