QMUL responds to Davis/Tuller/Levin/Racaniello PACE data FOI

[Esther12]

...having read the QMUL response are they suggesting the request for data release includes recorded patient interviews/therapy sessions? Is this where the sticking point lies?
The ME/CFS community and researchers only want the numerical data for analysis, which is obviously easy to anonymise - but if the PACE team distort this request by suggesting release of data includes highly personal and identifying audio recordings then they have a good excuse to refuse the release of data on the grounds of patient confidentiality.
The data release request published is very precise in what data it is asking for - maybe, to avoid (deliberate?) confusion they need to stress what data they are not requesting.

Easy to be confused when QMUL churn out nonsense. It was clearly only the anonymised data which was requested, and QMUL are trying to claim this is personal data which cannot be annonymised in order to avoid releasing it. Bizarrely, PACE previously lost some recordings of patient therapy sessions but Prof White claimed that this was not personal data, and patients did not need to be informed about the loss.

According to the ISRCTN Registry ISRCTN54285094 ( PACE)(sorry I can't post links yet)
Overall trial start date
14/06/2004
Overall trial end date
01/07/2011
(sorry I can't post links yet)

Do those dates mean anything?

The PACE trail paper with one year follow up was: Published Online: 18 February 2011

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

Maybe the above is dates for 2.5 year follow-up?

 

[Mrs Sowester]

Thank you Jimells, yes I'm finding the forum very useful already.

And yes, you're right - they are trying to put the requests for data sharing 'out to the long grass' in the hope everyone gives up - they've built their lives/careers/reputations on a belief in somatic illness and are as totally invested in their magical thinking as we patients are invested in our knowledge that we are disabled with a (or a group of several similar) biological disease(s) that are worsened by GET.

And again yes, our argument has been won on paper but the Pace team is effectively saying "not listening la la la" fingers in ears hoping we go away - because it has too much invested to do any different and holds all the power.
The way to win is to knock down each of the Pace team's objections directly, calmly and logically - just as many of you do so well here on PR. The 1st requests were refused because they played the 'vexatious request' card, patients and advocates have floored that one tactically by being reasonable and presenting logical indisputable arguments. So now they play the 'patient confidentiality' card - well surely the answer to that one is to state clearly in the appeal that patient therapy session recordings are not being requested - just numerical data.

As I see it they present skittles, patients and advocates can knock them down, one by one - the vexatious one was the difficult one (takes time to demonstrate calm, reasonable, genuine intent and disprove their myths) - but this next patient confidentiality excuse is an easy skittle to knock down. The next skittle they present will be easier still.

I also think the patients and advocates group aren't making the headway they could be because Pace has so many flaws, which sounds counter intuitive, but it would be more effective to focus on 3 main points of criticism and hammer them home - rather than the scatter gun approach used to date.

Anyway, that's my take on how to win an argument with a psycho-babbling cabal!

 

[Mrs Sowester]

Hi Esther12, that's kind of what I was trying to say (not good in the brain dept. in the morning) they deliberately interpreted the request to mean all data, the counter argument is surely a polite reiteration of the request that actually states clearly "we do not request the release of any data that would compromise patient confidentiality". I haven't seen that stated in any of the data requests that have been posted online, but I've probably missed some.

 

[Dolphin]

This looks to me like a red herring. The latest follow-up I recall being talked about was at five years. The trial is over now longer than that.

641 participants were recruited from six secondary care clinics in the UK from March 18, 2005, to Nov 28, 2008, and randomly allocated (1:1:1:1) to SMC alone, or SMC plus APT, CBT, or GET.

 

[leela]

Is anyone directly in touch with David Tuller? I wonder if he is aware of the quote from Tony Blair's biography lamenting that he felt the FOI act was "his biggest mistake"
and the recent article where another team of journalists were called "vexatious" for a FOI request, with pretty much the same template that QMUL has been using?
http://www.independent.co.uk/news/u...t-was-only-fair-to-ask-for-hers-a6785591.html
There *is* a larger campaign here to shut down transparency, and I think it is well worth addressing that for the benefit of all.
If anyone can pass this along to Tuller and Coyne, I think they might be interested to include this in the larger scientific/governmental discussion.

It's starting to feel like an Old Guard resisting the tides of change kind of thing, relying on their entrenched buddy system to allow an absurd clinging to a system that cannot withstand the technology that already exists and is rapidly evolving around them.

 

[Yogi]

This was expected from the vexatious PACE investigators.

They are in a lose lose situation. What can we do as a community to get more exposure and attract more scientific attention to this story given the open data in science everyone keeps going on about?

Can we get more mainstream media attention focusing on them due to the FOI Act being looked at by the government.

How can we use this vexatious behaviour by them to our advantage?

 

[Mrs Sowester]

I recall an item on Radio4 last year re. FOI requests and how much time and expense gov. departments are spending fulfilling requests for pesky journalists - so the spinning began a while back. I don't imagine the press will get behind them with their anti FOI propaganda though!
On the other hand did anyone see the Lancet statement on data sharing? http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01279-9/fulltext
Interesting timing, eh?

 

[Esther12]

Hi Esther12, that's kind of what I was trying to say (not good in the brain dept. in the morning) they deliberately interpreted the request to mean all data, the counter argument is surely a polite reiteration of the request that actually states clearly "we do not request the release of any data that would compromise patient confidentiality". I haven't seen that stated in any of the data requests that have been posted online, but I've probably missed some.

I don't think that QMUL did interpret the request to mean all data, but are instead pretending that the specific data requested should be classed as personal data.

 

[Mark]

According to the ISRCTN Registry ISRCTN54285094 ( PACE)(sorry I can't post links yet)
Overall trial start date
14/06/2004
Overall trial end date
01/07/2011
(sorry I can't post links yet)

Do those dates mean anything?

If they can contact the patients again to run a new follow-up trial, 5 years after the trial has ended, then they can contact them to ask if they'd agree to the public release of their fully anonymised trial data.

While they're at it, they could ask them if they'd mind wearing actometers for a week, so we could all see just how much all those recoveries moderate improvements have increased the patients' activity levels since the start of the trial.

 

[Hip]

What if the researchers who want to independently review and re-analyze the PACE data agree to do so without releasing the raw data to the public?

That would allow a full independent re-analysis of the PACE data, and Queen Mary College could not argue that the patients' personal data will be released.