Trial By Error: QMUL and FOI; Nature and Cochrane; the Pineapple Fund

Good points! She did mention it was under a confidentiality agreement, so it would have to be done in line with the university, as they are incapable of providing the data themselves. But more interesting is your other point about this suggesting there is sufficient documentation for others to interpret it.

 

But don't we already know this? Didn't they have a laptop stolen from an unlocked office that contained recordings of patients' interviews? Or was that something else?

 

If QMUL (and/or the PACE team) are lying about the data being accessible, wouldn't that be perjury if they did so in a court (I can't remember whether this data request reached a tribunal stage)?

Even if they're merely being evasive, perhaps the next FOI request could be to nail down details of exactly what the problem is supposed to be with the data storage/retrieval, @dave30th? Perhaps there are people here like @Adrian with the expertise to help draw up an undodgeable question.

 

Now that the data from a £5m, publicly funded trial are no longer available and for all time, I think we do need to ask QMUL these questions. The situation is completely unacceptable, especially when that trial is at the centre of a storm of controversy.

 

Has the Scottish MP who's doing that debate next week been briefed on this data-access issue?

 

It would also be interesting to know the relevant contractual provisions. One would not expect a project lead to be able simply to walk away without having fully briefed someone, especially where there are ongoing contentious matters with potential costs to the organisation.

 

Further, are they telling us that White inputted the all data entry himself by hand? If not, how did any others know which fields to add the data to?

Was the database tested for integrity by a third party? I'd want to make sure the data in my £5 million database was correct.

Even from the starting point it doesn't make sense. Who makes a database without clear (or deduce-able) labeling? I can see it being viable for a single person project, but not one involving a team.

 

I was pondering the question how could QMUL, implicit in their own claims, miss the facts that one of their Proffessors was retiring and that this would mean that they would not be able to access a significant set data even though they were concurrently fighting several prominent freedom of information requests in relation to that data?

For the cynically minded this raises all sorts of questions about whether or not this is an excuse on the part of QMUL to avoid releasing any further data from this highly controversial study: as people have already raised, what is so peculiar about this data or its storage that only the original investigators whilst in the employ of QMUL can access it, is there no duplicate sets of the data held by the other insitutions involved in the research or by the privileged few other academics that were allowed to see it that could be authorised for release by QMUL, how can further articles and PACE follow ups be planned if the original data is no longer accessible, how can Prof White be simultaneously available to head up this follow up under QMUL and not available to access the data for a freedom of information request, etc

Alternatively one could naively give QMUL the benefit of the doubt and wonder if they were some how taken by surprise by the retirement of Prof White. Can we assume that he was due to retire at 65 years or would that be discretionary for a proffessor? If 65 was his retirement age then it would seem he went a matter of months early, aged 64 yrs, leaving both his academic work at QMUL and his clinical practice at Barts. Is it fair or reasonable to ask why he took early retirement? Some suggest this should be asked, see http://niceguidelines.blogspot.co.uk/2016/09/pace-trials-principal-investigator.html . That Prof White continues to be active on the insurance lecture circuit and is listed as the lead in the ongoing PACE work is at best confusing. I do not know enough myself to fairly make any comments on this early retirement, but certainly believe that QMUL have questions to answer as to why they failed to undertake any contingency planning in relation to this internationally significant data.

(Added shortly after posting: QMUL either have been incompetent or are being untruthful, and the FOI process needs to demand which it is. As a commentor on one of the threads raised, could this in itself be the subject of a FOI request?)

 

Don't fall into their trap. When you take liars, scammers and people acting in bad faith at their word and try to explain it then your only kneecapping your position which is their goal, find an excuse they can win and keeps you in a feedback loop. They are screwed because they committed fraud and are desperately trying to cover for it by any excuse they can think of that will stick. If A won't work, then B, if B fails then C and so on. If we want the data we don't fall for their flawed but effective traps, we figure out our next step. By law its public data, so if they won't release it and the law has no prescribed penalty then perhaps the courts are needed again, or we shame them in parliament or something else (even high profile) that forces them to live up to their legal obligations.
We can't forget another tactic is their militant patient narrative, they have to vilify those they claim to be advocating for because they know they are lying.

I'm not quite with it so i might not be explaining well (and i don't just mean my reply at your post). This is a classic political maneuver straight from US politics, they are attempting to baffle us and everyone else with bull****, keep us spinning our wheels and going off on tangents until they can invent something indisputable that people (or the governments/courts) will accept.

 

I'd do the calculation for them for the cost of train fare and a sandwich. It would be a nice day out, as long as it was one of my good days.

Edit : I've already got my own calculator.

 

We could crowd fund you!

 

Well there may not be "serious flaws from the data", but its still a question of what the data shows.

Lets say for example a set of data showed 70% of people to suffer adverse long term affects from a treatment and that data is never published, one could still claim the secret data shows no serious flaws.

It would just show inconvenient truths that don't match predetermined conclusions and paradigms.

 

True. But in this case she meant there were no problems with any aspects of the PACE-trial, including its outcome. It proves that GET and CBT are safe and effective treatments.

 

see:
"At a meeting organized and financed by PACE investigator Peter White, Larun obtained privileged access to data that the PACE investigators have spent tens of thousands of pounds to keep most of us from viewing. Larun used this information to legitimize outcome switching or p-hacking favorable to the PACE investigators’ interests. The Cochrane review misled readers in presenting how some analyses were conducted that were crucial to its conclusions."

https://jcoynester.wordpress.com/tag/lillebeth-larun/

 

Thanks. I see your point more clearly now.

 

Continuing the feline theme, may I suggest Simon ‘Macavity’ Wessely and Esther ‘Puss-in-Boots’ Crawley?