Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

[Tom Kindlon]

Another scan.
http://www.filedropper.com/paceappealdecision

I don't know how good a scan it is but I was able to copy all the text in one go.

For completeness, here is another scan somebody sent me.

 

[Sea]

It was a majority decision, which seems to suggest that one of the three tribunal members was against us and it could have been a close thing!

The reasons for their decision are given from page 39 onwards, the reasons why the one tribunal member disagreed are given on page 42. The difference between the two, the reasons for release are detailed while the reasons against release are, in the main, one sentence long, hopefully indicates how much weight will be given to them in the future.

It was a unanimous decision except for one point. One tribunal member believes there is a less than probable but more than remote possibility of identifying participants.

 

[Kati]

Uncharted waters:

Feel free to use in social media (note: I am not sure who the author is for the first picture)

 

[Flash of Hope]

Wow, I hope they took some comfort from that fact that they were in the right place to get help with their paranoia, apparently CBT can be very effective as long as the patient is willing to accept treatment.

My thoughts exactly.

There should be research done to these "researchers" to investigate if there is link between childhood trauma and gross exaggerating of threat feelings. Maybe they are suffering from negative feedback phobia coming from daddy issues mixed with bowel control problems in their early childhood.

This should cross all the requisite boxes to make this valid theory to explanation their actions

 

[Seven7]

My husband respond was: " imagine this scenario, punch one doctor then Cfs patient sits and ask "wait for me to recover" we don't know for how long so I can have another go at you again!

The thought of a militant Cfser is quite depressing/hilarious.

 

[user9876]

I recall they were afraid of the possibility at one stage of their trial paticipants being discouraged from being involved or having people sign up to a trial with the hidden intent of sabotaging it. Not that there was ever any evidence that pointed towards that being a possibility.

I suspect that people are less likely to join QMUL trials because they look sleazy stopping patients accessing data than for any act of sharing anomymised data.

 

[adreno]

A few questions. If there's no given time limit for the eventual appeal, or release of the data, how is this handled in practice? Can they drag out things indefinitely? Are there actually any sanctions if they don't release the data after this ruling?

 

[alex3619]

Dutch? I can only think of Belgian report.

I recall three government reviews. None were favourable. One of the countries had two studies, I think that was Belgium but I could be wrong. These are from years ago.

 

[AndyPR]

Why before they review the data? This confused me some, am I missing something?

Review which data? These are two separate events, they didn't need the PACE data to be able to amend their treatment recommendations, that was based on looking at what symptom criteria each study used.

 

[AndyPR]

A few questions. If there's no given time limit for the eventual appeal, or release of the data, how is this handled in practice? Can they drag out things indefinitely? Are there actually any sanctions if they don't release the data after this ruling?

Valerie answered this earlier

It might be a couple of months before the data is released (if they don't appeal) but it could be sooner or later than that. There's no way of predicting, unfortunately.

QMUL will need to seek permission to appeal (on a point of law only - it's not an automatic right of appeal), firstly from this Tribunal but, if that is refused, they can appeal directly to the next level for permission ie. the Upper Tribunal. It's confusing, I know. This post gives an overview of how it works: https://valerieeliotsmith.com/2015/12/16/foia-a-briefing-note-how-many-pace-requests/

I also thought that I'd seen a time limit of 30 days to release the data if no appeal is made but can't remember who said that.

ETA: From the link above, the time limit in which QMUL have to appeal within is 35 days, although apparently that can be somewhat flexible, for unexplained reasons, although my uneducated guess would be that, if they wanted to appeal but felt they needed extra time then they would need to declare that.

 

[alex3619]

said or done which contradicted their own claims

Much like the research itself then.

 

[Snow Leopard]

It might be a couple of months before the data is released (if they don't appeal) but it could be sooner or later than that. There's no way of predicting, unfortunately.

QMUL will need to seek permission to appeal (on a point of law only - it's not an automatic right of appeal), firstly from this Tribunal but, if that is refused, they can appeal directly to the next level for permission ie. the Upper Tribunal. It's confusing, I know. This post gives an overview of how it works: https://valerieeliotsmith.com/2015/12/16/foia-a-briefing-note-how-many-pace-requests/

For those of us who aren't lawyers, what would a "point of law" look like in a case such as this?

 

[Kati]

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?

Just curious. We all know how important for these authors it is to save face, government grants, employment at their universities, and to save careers?

(Yes, yes, I know, this forum is being read by all kinds of people)

 

[alex3619]

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?

Its possible but difficult, time consuming and super risky, especially since it would require expert help. Given the level of scrutiny by many scientists I think this would be found out. So I think it unlikely we might see this. I also doubt its in their nature to do so ... they love to re-characterize labels and definitions, but are very careful in that they say exactly what they are doing (unless they are working on omitting stuff like fitness data) and its up to the reader to figure it out.

 

[Kati]

Its possible but difficult, time consuming and super risky, especially since it would require expert help. Given the level of scrutiny by many scientists I think this would be found out. So I think it unlikely we might see this. I also doubt its in their nature to do so ... they love to re-characterize labels and definitions, but are very careful in that they say exactly what they are doing (unless they are working on omitting stuff like fitness data) and its up to the reader to figure it out.

Thank you @alex3619 great answer.

 

[AndyPR]

For those of us who aren't lawyers, what would a "point of law" look like in a case such as this?

Please note, I'm no lawyer/have no law training. As I understand it, a point of law would be a situation where the law has been incorrectly applied. In this situation it has become less likely to be used as an argument, due to the Tribunal confirming that the ruling to release the data had been correct in the first place, all the 'evidence' that QMUL put forward wasn't enough to convince the tribunal an error had been made.

Hope that helps, if anybody knows better please correct me.

 

[Valentijn]

For those of us who aren't lawyers, what would a "point of law" look like in a case such as this?

Basically that the law was interpreted incorrectly, that the wrong law was applied, or an additional law should have been considered. One point of law they've already unsuccessfully argued to the ICO and Tribunal, is that a newer rule (regarding consideration of financial harm to the institution if data is released) should be applied retroactively.

Laws are almost never applied retroactively, because it messes everything up and creates uncertainty regarding present actions if you might get prosecuted/penalized in the future for an action which was appropriate at the time it was done. And when they are applied retroactively, it's almost always because the law explicitly states that it applies retroactively, and very very rarely because there is an extraordinary need to apply it retroactively.

Frankly it was an extremely daft thing for QMUL to argue in the first place, because it has no shot at succeeding. And it's one of those issues that goes beyond "let's trust the good ol' boys, wink wink" into "let's completely challenge the fundamental principles of the legal system."

Their entire case has suffered from the same type of problem - their main arguments, if accepted, would essentially have gutted the entire Freedom of Information Act. I suspect that is why they have often relied on a more subjective "vexatious" narrative, and with some success in the past they have been able to convince the ICO that we are too crazy and dangerous to be given any information. But even that has been quite an abuse of the "vexatious" exception, and has now been refuted by the Tribunal.

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?

It won't happen. Other researchers (co-authors on various papers) have had at least some access to the data, and they don't have their careers depending upon PACE. So they wouldn't be willing to risk criminal charges to help the PACE authors cover up any such alterations. And it's very unlikely the PACE authors would risk it either.

It's also pretty hard to fake such data in a manner which will produce the same results that they have already published. The data in the papers is probably accurate to some extent - at least, accurate enough to avoid being outright fraud.

The real problems are more likely to occur in the analyses of the data, and those problems are already quite clear: the absurd lowering of "recovery" thresholds, substituting therapist scores for patients who don't score themselves, changing the scoring method of the Chalder Fatigue Scale, etc.

The main interest in the data is in using it to calculate recovery figures based on the PACE protocol, before recovery thresholds were mangled. Then the outcomes can be compared, and it can provide an additional way for therapists and patients to decide if those therapies are worth trying.

 

[Cheshire]

QMUL's statement:

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.

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

 

[worldbackwards]

QMUL's statement:


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

Chortle.

 

[Valentijn]

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.

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.