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

[large donner]

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.

Ah then my previous post explains another issue, whereas her statement to you proves she is an ignoramus, no data required.

 

[dave30th]

The reasoning in the ICO decision about why they don't have to ask Chalder or Sharpe for help seems to be that QMUL shouldn't have to do what other institutions shouldn't have to do. In other words, another public health agency--say, the Garbage Department--shouldn't be expected to have to bring someone over from the Housing Department to answer a Garbage Dept FOI. Similarly, QMUL shouldn't have to "borrow" people from KCL (Chalder) or Oxford (Sharpe) to answer a QMUL FOI. And while it is acknowledged that QMUL would likely have other stats people who could figure it out, the Garbage Dept would not, for example, happen to have an extra stats person around to answer a FOI request, and wouldn't be able to call on one. So QMUL should not be treated differently and have to call on another stats person, unrelated to PACE, just because they happen to have other stats people around. The reasoning is obviously very unhelpful in this case, although you can see that it makes sense from a certain perspective. Whether it holds up, I guess we'll see, since John Peters says he has appealed the ICO decision.

 

[Allele]

I don't understand. Data is data. A publicly funded trial was completed and filed.
click, click click, send.

 

[Alvin]

The reasoning in the ICO decision about why they don't have to ask Chalder or Sharpe for help seems to be that QMUL shouldn't have to do what other institutions shouldn't have to do. In other words, another public health agency--say, the Garbage Department--shouldn't be expected to have to bring someone over from the Housing Department to answer a Garbage Dept FOI. Similarly, QMUL shouldn't have to "borrow" people from KCL (Chalder) or Oxford (Sharpe) to answer a QMUL FOI. And while it is acknowledged that QMUL would likely have other stats people who could figure it out, the Garbage Dept would not, for example, happen to have an extra stats person around to answer a FOI request, and wouldn't be able to call on one. So QMUL should not be treated differently and have to call on another stats person, unrelated to PACE, just because they happen to have other stats people around. The reasoning is obviously very unhelpful in this case, although you can see that it makes sense from a certain perspective. Whether it holds up, I guess we'll see, since John Peters says he has appealed the ICO decision.

But if i understand correctly what we are asking is equivalent to asking the garbage department to send us their pickup schedules, something they have on hand and is publicly financed information. Of course they would just have a pamphlet to send us and they would do it but in this case we know they are acting in bad faith, changing excuses, being caught in lies and so forth. Thats why i would be careful about falling into their trap of why it can't be done but focus on their goal of preventing the data release.

I don't understand. Data is data. A publicly funded trial was completed and filed.
click, click click, send.

Think of it this way, they lied and don't want to give us the evidence to prove how serious their lies are so they try to invent excuses we can't refute. They want to set the narrative and use it to defeat us. Its a form of divide and conquer.

 

[Indigophoton]

if i understand correctly what we are asking is equivalent to asking the garbage department to send us their pickup schedules

What we're asking is for the Garbage Dept to send us the data from a survey they did on what people think of their rubbish collections. Everyone who was involved in the survey has retired or moved on, and no one currently in the Garbage Dept knows how to find the results from the survey.

 

[Alvin]

What we're asking is for the Garbage Dept to send us the data from a survey they did on what people think of their rubbish collections. Everyone who was involved in the survey has retired or moved on, and no one currently in the Garbage Dept knows how to find the results from the survey.

If i had paid for the survey i would ask for a refund, its a waste of money to do something then have no data. Then again i don't work in government

 

[Indigophoton]

@Alvin, yeah, but I guess the PACE authors have published, so there are results of the expenditure (albeit terrible ones).

 

[Sly Saint]

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

I emailed her a few days ago about this issue and continue to pass on any relevant info

 

[Sly Saint]

The reasoning in the ICO decision about why they don't have to ask Chalder or Sharpe for help seems to be that QMUL shouldn't have to do what other institutions shouldn't have to do. In other words, another public health agency--say, the Garbage Department--shouldn't be expected to have to bring someone over from the Housing Department to answer a Garbage Dept FOI. Similarly, QMUL shouldn't have to "borrow" people from KCL (Chalder) or Oxford (Sharpe) to answer a QMUL FOI. And while it is acknowledged that QMUL would likely have other stats people who could figure it out, the Garbage Dept would not, for example, happen to have an extra stats person around to answer a FOI request, and wouldn't be able to call on one. So QMUL should not be treated differently and have to call on another stats person, unrelated to PACE, just because they happen to have other stats people around. The reasoning is obviously very unhelpful in this case, although you can see that it makes sense from a certain perspective. Whether it holds up, I guess we'll see, since John Peters says he has appealed the ICO decision.

So what would they do if another researcher wanted the data? (I realise this doesn't fall in the jurisdiction of the FOI, but hypothetically ).

I still think the best course of action is to somehow lobby to get an independent reanalysis of the data and comprehensive review of the protocols.

 

[Adrian]

The reasoning in the ICO decision about why they don't have to ask Chalder or Sharpe for help seems to be that QMUL shouldn't have to do what other institutions shouldn't have to do. In other words, another public health agency--say, the Garbage Department--shouldn't be expected to have to bring someone over from the Housing Department to answer a Garbage Dept FOI. Similarly, QMUL shouldn't have to "borrow" people from KCL (Chalder) or Oxford (Sharpe) to answer a QMUL FOI. And while it is acknowledged that QMUL would likely have other stats people who could figure it out, the Garbage Dept would not, for example, happen to have an extra stats person around to answer a FOI request, and wouldn't be able to call on one. So QMUL should not be treated differently and have to call on another stats person, unrelated to PACE, just because they happen to have other stats people around. The reasoning is obviously very unhelpful in this case, although you can see that it makes sense from a certain perspective. Whether it holds up, I guess we'll see, since John Peters says he has appealed the ICO decision.

But i the Garbage Dept had a sub-department the called green bin collection and they closed then they wouldn't be able to avoid a FoI request because that part of the organisation no longer existed. They would be expected to provide the information having someone from a different dept now going through the documents. Otherwise government departments would be reorganizing as an anti-FoI strategy. Its not like they need a specialist statistician with knowledge of unusual research techniques to access the data just someone who has some basic data science skills.

QMUL are the legal entity responsible for the PACE trial they tried to avoid this at the start but they had to sign up to being responsible. They should bot be allowed to avoid their duty in such a way. I can see this excuse being repeated by many trying to avoid disclosure. QMUL does employ people to do this so they should use those people to meet their legal duty.

 

[guest001]

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

I think she needs to address these questions. Pretty important...

Edit: I see Sly Saint is already on the mission

 

[Barry]

I think the ICO may be setting a very dangerous precedent in that QMUL are the institution responsible but they are allowing them to localise the problem to a given team and claim that team didn't exist. QMUL clearly have employees with the skills to access the files and do the work.

Can you imagine if a government department were to respond to an FoI request say for data that may be politically damaging and they said but the person doing that has left or we closed that team down.

Rather think they are digging a nice deep hole for themselves.

 

[Allele]

Rather think they are digging a nice deep hole for themselves.

Yes and they are relying on allies to come fill that hole with a load of fresh manure.

 

[Barry]

It was a stolen tape recorder for PACE there was a previous incident of a stolen computer at Kings which appeared after a statistician challenged stats in Wessely's paper.

My interpretation was not that they had lost the data but that they couldn't interpret the bits.

From my perspective working in IT security and understanding something about how data sets should be managed it is quite an admission for a university to make that a data set from a trial would only be interpretable by a few individuals. It feels totally unprofessional the data schemas should be well documented (people come and go during projects).

To get the data out should be a case of simply extracting columns from data frames (or what ever they are called in stata) or doing queries into the access database that the data was originally kept in. So their claim that the data is not interpretable suggests to me that they have inadequate documentation over which data frames contain which fields along with which columns are which.

I find this completely horrifying. It suggests a huge degree of amateurism. Its also worrying for the data analysis. If it isn't clear which data is in which table or column then how can the people doing the analysis ensure that they are using the right data and hence check the results are correct. Did anyone QA the results.

From a security handling perspective if they can't show professionalism in one area I would worry that they could keep data secure. Academic institutions have a reputation for poor security because the IT departments find it hard to impose policies on academics who claim they should be free to do what they want.

Of course I don't believe they would have been quite so sloppy with their data handling. I think that QMUL have data scientists who could extract the data probably within a few hours!

I think they are just trying to pull the wool, and making an embarrassingly abysmal job of it.

 

[Jonathan Edwards]

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.

It seems clear that they are lying. People like Larun are obviously a position to interpret the data. The files would appear to exist - since the claim is that they are merely unreadable.

My recent conversation with a colleague at QMUL would suggest that other academics are pretty embarrassed by the whole goings on. I think the pressure should be maintained full throttle. The whole thing is a disgrace.

 

[Allele]

I think we have perhaps stumbled into the same den of iniquity that caused the so-called UK ME files to be sealed from the public for something like three times the normal period of time. If someone could clarify, espicially for @dave30th 's benefit, what the files are and for how long they are sequestered, that might be useful for a future article.

ETA: Had forgotten Valerie Elliot Smith had success in getting them released despite the unusual 78-yr embargo. Here they are:
https://www.thegracecharityforme.org/TNA/

One wonders what has been generating all the shenanigans and secrecy.

 

[Sasha]

It seems clear that they are lying. People like Larun are obviously a position to interpret the data. The files would appear to exist - since the claim is that they are merely unreadable.

Is this going all the way up towards a tribunal now where perjury would be an issue?

My recent conversation with a colleague at QMUL would suggest that other academics are pretty embarrassed by the whole goings on. I think the pressure should be maintained full throttle. The whole thing is a disgrace.

I'm surprised that academics within QMUL can hear us, within their ivory tower (well, breeze-block tower). Are they aware, then? We've done a ton of shouting but it's hard to tell whether anyone is listening. If they are, they could be a big help by speaking up.

Yes, this whole thing is a disgrace, and as a patient whose health is affected by this shit, I want people going to jail if they're breaking the law in relation to it.

 

[Barry]

Is there anything that might be useful in QMUL's Data Retention Policy I wonder ...

http://www.arcs.qmul.ac.uk/media/arcs/policyzone/Records-Retention-Policy-2010-v01.1.pdf

1.4 The purpose of this records retention policy (and associated retention schedule and procedures) is to promote best practice in records management in order to protect the interests and support the core functions of the College by ensuring the consistent and orderly maintenance and retention of adequate, unaltered and accurate records for the appropriate periods of time to satisfy relevant statutory and contractual legal, financial, operational and research requirements. It is also to ensure the prompt and confidential disposal of records when such requirements have ceased so as to avoid unnecessary costs relating to records maintenance or any possible liabilities. QMUL also desires to comply with the Lord Chancellor’s Code of Practice issued under s.46 of the Freedom of Information Act 2000 to enable it to comply with its statutory obligations under the Act.

3.5 The majority of records will eventually be destroyed, however, the small proportion of records and artefacts deemed to be of permanent legal or historical significance will be preserved in QMUL’s historical archives facilities.

3.6 Retention policies for different series of records should be decided on the basis of any relevant legal requirements and a consideration of the value of the records for operational reasons both now and in the future.

3.9 Operational retention requirements should be based on an assessment of the value of the information, taking into account the need for evidence of processes, the probability of future use and the consequences if the information were not available. Information value and reference rate usually decline over time so a decision should be made as to the point the records are likely no longer to be required

4.5 All employees are responsible for ensuring that accurate and adequate records relating to their areas of responsibility are maintained. They are also responsible for records inherited from predecessors in their role. They are also responsible for the disposal or storage of their records when they cease to be in regular use. This should be done in compliance with the relevant records retention schedule. If these procedures are delegated, appropriate guidance and controls should be 4 put in place to ensure records are identified and described adequately and the correct retention periods allocated. Employees may also be responsible for making decisions when stored records reaching the end of their retention period are referred to them for review.

4.8 Compliance with this Policy and related procedures is mandatory. It applies to all sectors, schools and departments in QMUL. Compliance will be monitored by the Records & Information Compliance Manager.

 

[Barry]

It seems clear that they are lying. People like Larun are obviously a position to interpret the data. The files would appear to exist - since the claim is that they are merely unreadable.

My recent conversation with a colleague at QMUL would suggest that other academics are pretty embarrassed by the whole goings on. I think the pressure should be maintained full throttle. The whole thing is a disgrace.

Absolutely. They are floundering and lying very badly.

 

[Adrian]

I'm surprised that academics within QMUL can hear us, within their ivory tower (well, breeze-block tower). Are they aware, then? We've done a ton of shouting but it's hard to tell whether anyone is listening. If they are, they could be a big help by speaking up.

Before the information tribunal I remember tweeting an academic whose subject was ethics who was also on the QMUL council and he blocked me. But perhaps they know it won't go away as an issue and it will affect their reputations but I think this continued cover up will continue to do harm.

I think it is an issue for the ethical approval of trials if QMUL can't maintain sufficient governance over trials to maintain data as a usable resource.