Discussion in 'General ME/CFS News' started by Kalliope, Feb 13, 2018.
QMUL and FOI; Nature and Cochrane; the Pineapple Fund
Domain name isn't resolving for me. Seems they are still having some server issues at Virology.
ETA: I switched my VPN to another node and it resolved. Maybe just a hiccup.
Oh, what a pity. It works fine for me..
Tuller writes about
Queen Mary University of London's numerous attempts on avoiding having to comply with more PACE-related freedom of information requests
how the Cochrane systematic review of GET and CBT continues to be a big problem
Nature's recent piece on current biomedical research into ME, and the pushback from the PACE-team in their letter to Nature
the donation from Pineapple Fund including a couple of questions to Ron Davis about the donation:
David Tuller: How do you deal with an influx of that kind of money all at once?
Ron Davis: I’m struggling exactly with how to do this. Do we go the safe route and spread it out over several years, or do we accelerate the spending with the hope we’ll get more money in the future? I could say we’ll spent $1 million for the next five but that makes everything go slow. You don’t want to throw a bunch of people on the same project just to make it go faster. Sometimes you have to do things sequentially. What I’m trying to do now is put things together to make this go faster without decreasing efficiency. We’re not going to waste it doing crazy things.
Always makes my day when there's a new entry ro read!
This bit about the QMUL data refusal is fascinating:
If public funds were used to produce the PACE data, to me...the data is for the benefit of the public and should be produced if the law states that the petitioners have a right to access it. The court reasoning is unsound as a matter of law and the public interest. I really appreciate David Tuller's questioning why Peter White is named on a 10-year follow-up headed by QMUL...but wonder why the petitioner's counsel did not investigate this or use this argument. Perhaps they did, I have not been following that closely. David is great at his work and he manages to make my blood boil and put a smile on my face at the same time for exposing the shenanigans.
From one of the comments
Thank you David for pointing out about Shrodinger's proffessor, who is both not available to work for QMUL in accessing the PACE FIO data and simultaneously available to head up the PACE follow up under QMUL.
Henceforth let him be known as Shrodinger's professor!
They seem desperate to cover up even at the risk of saying they can't manage trial data properly. If the data was not adequately documented then it suggests they did not have adequate systems to ensure that the results they quote are correct.
As well as White still being involved with new projects they also have a data sharing policy - I assume that this is an admission that the policy is basically a lie.
Or of course as an institution they could have simply decided to mislead the ICO! It would be interesting to know who they asked if the data was available.
In the US, data is held in trust for the public. There are legitimate reasons why some data can be withheld, like for security purposes. In my state, refusal or delay in producing information can lead to fines that mount daily.
Does QMUL have a library? I mean, do they spend funds to employ librarians to help the public access information they hold? Oh my gosh, what a financial burden on an academic institution!
The QMUL student newspaper has covered the PACE Trial data in the past. Time for another article?
Yes, I like the way David has clarified the nonsensical now-you-see-the-data-now-you-don't absurdity, making it obvious for all to see that it is nothing more than a ludicrously childish excuse. The more they resist releasing further data, the more you wonder just what it is they are so desperate to hide. It's beyond pathetic.
Is this what they've done with the data?
This is what I'm trying to figure out. They must know this makes them look utterly incompetent. They must know it will be discussed online. There may be other nuggets of dodgy dealing with the PACE trial, but I can't see that it would be so bad, compared to everything else to warrant this.
Something else is going on.
I'm happy to see Dr Davis' reply, its something i wondered.
As for the PACE scandal always an excuse because they are on the defensive, they essentially committed fraud and have to protect themselves from reality. We should not let this go, can we sue for the data or why its unable to be retrieved, or offer to pay for its release (one day walking into a lab and logging into a computer at his previous salary divide by 365). If we can prove he has gone to the lab since he "retired" thats also evidence they are lying (as if here is any doubt but a court would need physical evidence).
Does make you wonder if the fraud case would be laid open, and they are cr*pping themselves at the thought.
Remember they are selling services to the NHS based on claims made in the pace trial. That's what one of the latest MUS slide sets suggested.
Thanks for posting - and to Tuller for writing. A lot going on.
The way they can get away with relying on that flawed Cochrane review is so darn annoying.
Also - we're still waiting for PACE papers on 'predictors' and LTFU employment data. What's going to happen with this stuff?
I didn't know that they managed to move instantly from claiming that the data was exempt as it was due to be released in a peer-reviewed paper to, 'no-one can access the data because everyone connected to the trial had retired'. There wasn't even a day between them giving up on releasing all those further papers but still been employed by QMUL?
I once had a brief encounter with Lillebeth Larun from the Cochrane review group. She held a lecture about GET and CBT at my local hospital and we had a chat in the break. When discussing the PACE-trial, she said that she was one of the few who had access to the data from the trial (and therefore knew there were no serious flaws with it).
If this is true, could Larun be a way in to get the data?
I love Dr Tullers articles - they really make me hope that as a community we are still chipping away and getting results.
It's like a giant strategy game - maybe we should nickname it The Game of Crone(ie)s
Things that jump out from this one:
" It mainly cited exemption provisions of the FOI law that cover data considered part of an ongoing research project or scheduled to be included in future publications,"
- If everyone that has access to the data had left then presumably there are no plans for future publications. Therefore they can't use this as an excuse.
"The HRA site indicates that the ten-year-follow-up feasibility study received ethics committee approval on January 3, 2017. The listed sponsor is QMUL, and the contact is Professor White."
- Ditto. If Peter White has just retired and he is the only one that can access the data then this relies on him being around in ten years time and available as a consultant to access the data. If they are going to be doing future publications then they will have put in place a system to be able to access the data so they are probably lying when they say that they can't get to it and the fact they have published they are going to do more analysis proves this.
- What is he listed as in this - is he still down as his original job title or has it been amended to indicate that he is now a consultant. Misrepresentation to secure funds and ethics approval?
"it would now have to recruit someone qualified to conduct the required extraction, analysis and preparation to comply with the request."
- we don't want the data to be analysed and prepared (as this is where the inaccuracies are produced). So if there is a cost to extract it from a computer ie put in the username and password and export it, then it will be minimal. I have seen FOI requests before that have been turned down and in that rejection there has been a calculation of the amount of time and therefore cost required to fulfill the request. If it is above a certain amount then they can refuse the request. I haven't seen the FOI here but if they didn't give this cost then they should do and we could see if it would be possible to fund it ourselves as someone already mentioned.
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