Queen Mary's appeal ICO decision on PACE data

[user9876]

Simple question~
Data is supposed to be maintained in such a way as to be readily released upon request. Why would the QMUL legal department and administration simply not instruct the PACE authors to release the data? It's easier, it's cheaper, and it's better for the university's reputation to do what is both transparent and standard in science. The administration has a reason to go through this degree of trouble, expense, and potential damage to the university's reputation. What is that reason if it's not that they fear the damage to the university will be worse if they do release the data?

I suspect they never really ask just go along with White. They should ask but I think management at UK universities is pretty poor.

 

[alex3619]

How, may I ask, did you figure out that the redacted information appeared to be nothing to do with personal data? Did you do this by looking at the context of the viewable text surrounding the redactions?

Yes, of course. The related text had nothing to do with patients or personal data. However text that did was left in.

 

[alex3619]

There were at least two releases of the so called secret files. Its important to read both.

 

[Hip]

Data is supposed to be maintained in such a way as to be readily released upon request. Why would the QMUL legal department and administration simply not instruct the PACE authors to release the data?

I suspect they never really ask just go along with White. They should ask but I think management at UK universities is pretty poor.

Indeed. I have no knowledge on how the FOI system works, but my assumption is that when it comes to requests for data from research studies, it is the researchers themselves who decide whether or not they want to release the data. After all, it is only the researchers that really know anything about the data.

 

[Hip]

There were at least two releases of the so called secret files. Its important to read both.

I am only aware of the scans of the secret documents that were compiled into pdf files by @Valerie Eliot Smith.

 

[SOC]

Indeed. I have no knowledge on how the FOI system works, but my assumption is that when it comes to requests for data from research studies, it is the researchers themselves who decide whether or not they want to release the data. After all, it is only the researchers that really know anything about the data.

An FOI request is a legal issue, iirc. That means it would go through the legal dept, not directly to researchers. Naturally, the researchers would be consulted as they have the data, but the responsibility is the university's and that means the administration is involved. If you doubt that, ask yourself why it was the QMUL legal dept that responded to the FOI request and not White himself.

 

[mfairma]

If anything like the American system, the decision to release data, as SOC noted, is a legal issue and not the responsibility of researchers. The researchers are not those who decide what does and does not get released. In our system, they would be handing off their documents and jockeying to influence how those documents are handled. I worked in FOIA briefly as I was becoming too sick to work. The stated government presumption, as in the Obama administration, may be one of openness, but the reality is that what government agencies can legally withhold, they will, even if the harm of release is imaginary. Where I worked, there was no chicanery around attempting to illegally withhold information (or at least very little), but that may not be the case everywhere, and certainly doesn't seem to be the case in this context. Further, there is a difficult balancing act with the FOIA, at least in the US, in that FOIA is handled by each agency individually, with FOIA divisions part of the larger agency. The result is that the people who process FOIA will be sensitive to the perceived needs of their agency and so may be unwilling or unable to advance the openness that drove the creation of FOIA. In that context, FOIA divisions may go the extra mile to support their agency by attempting to pass flimsy legal justifications. I don't recall anything as absurd as being able to deny a request as vexatious in the American system, however.

 

[Dolphin]

Regarding who is involved with the FOI requests, here's some info:

https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf

29. Given the very specific nature of the subject matter, QMUL has explained that the requests need to be handled mainly by one person, Professor Peter White who is the lead Co-Principal Investigator of the trial. Whilst Professor White acknowledges the legal responsibility he has to respond to requests, these take him away from other important responsibilities such as providing responses to Parliamentary Questions from both Houses, finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.

30. In addition to Professor White’s input, the requests take up a disproportionate amount of the Records & Information Compliance manager’s time. Handling FOI requests is only part of the role, and with already stretched resources, this represents a further burden especially when the history of requests suggest that these will continue.

 

[Woolie]

Professor Peter White's duties (from Dolphin's post above):

such as providing responses to Parliamentary Questions from both Houses, finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.

My goodness, not only is this man terribly important, but he is clearly a saint! Obviously well above any spinning of research results, only crazies could believe otherwise. What very clever writing on their part!

 

[daisybell]

Poor man having to deal with such a burden.... Perhaps he needs some cognitive behavioural therapy to help him to the realisation that if he only released the data, the FOI requests would stop........

 

[leela]

finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.

Would it not seem urgently prudent to these people to investigate the trial in question thoroughly, given that many of his other undertakings appear to be based on this possibly fraudulent trial? It seems to me it would be better to ascertain that the PACE trial can survive scrutiny *before* he continue with further publications and clinical trials, no?

this represents a further burden especially when the history of requests suggest that these will continue.

Talk about vexatious! If they would just release the gorram data, the requests would cease! Heavens to Betsy but I am feeling very vexed right now!

 

[alex3619]

You know, the FOI requests would stop and they would never have to worry about it if they just released the data.

PS What the last two posters said.

 

[SOC]

Poor man having to deal with such a burden.... Perhaps he needs some cognitive behavioural therapy to help him to the realisation that if he only released the data, the FOI requests would stop........

Honestly, if this is all such a burden for White and QMUL, then they need to do the quick, cheap, easy thing and release the data. They need to get on one side of this or the other. If it's too much effort to fight transparency and standard scientific process, then quit fighting. Don't complain that the trouble you yourself are creating is too much trouble for you. Sheesh! Indeed cognitive therapy seems in order here. There's clearly some pathological thought processes going on.

ETA: It appears we can all see the foolishness here. The answer to their problem is so blindingly obvious we're all having a hard time believing they can't see it.... or that they think the rest of the world is too stupid to see the obvious, I don't know which.

 

[picante]

If they were found to have fabricated data they'd be done.

According to the whistleblowers' court documents, Merck's misconduct was far-ranging: It "failed to disclose that its mumps vaccine was not as effective as Merck represented, (ii) used improper testing techniques, (iii) manipulated testing methodology, (iv) abandoned undesirable test results, (v) falsified test data, [...].
http://www.huffingtonpost.ca/lawrence-solomon/merck-whistleblowers_b_5881914.html

And that's only five out of a list of 12 items.

Of course, this is a Big Pharma Corporation; they may be relatively untouchable, compared to a university research group.

 

[SOC]

And that's only five out of a list of 12 items.

Of course, this is a Big Pharma Corporation; they may be relatively untouchable, compared to a university research group.

This university research group is not your average tenured professor and some grad students. This group is backed by some very big power brokers with a lot invested in this research, so they are much closer to a Big Pharma Corp than some small research group. Let's not kid ourselves that we're not fighting a very powerful, very influential, very politically savvy, too-big-to-fail organization.

 

[SOC]

The result is that the people who process FOIA will be sensitive to the perceived needs of their agency and so may be unwilling or unable to advance the openness that drove the creation of FOIA. In that context, FOIA divisions may go the extra mile to support their agency by attempting to pass flimsy legal justifications.

This is all true, but we have to keep in mind that this is not an FOIA request about government decisions and policies, this is scientific research. It's a different world. Scientists are supposed to be about openness. Your research is worthless if it can't be replicated and it can't be replicated if other researchers don't know what you did. Government agencies will always try to limit information about how they make their decisions and draw their conclusions -- that's politics. Scientists should always be completely transparent about what they did and how they drew their conclusions -- that's science.

IMO, the whole PACE study should be blown out of the water for just that reason -- it's non-blinded, non-controlled research that has never been replicated and worse, cannot be replicated because the researchers won't release the data necessary to evaluate and replicate their research. In other words, it's meaningless from a scientific perspective.

Compare the Norwegian Ritux work to the PACE study. The Ritux work is expected to be properly blinded, controlled, replicated and otherwise tied up with all the scientific bows before we'll ever see Ritux as a treatment for ME. Why is the same not true of PACE?

 

[Valentijn]

Even if White is handling most aspects of the FOI refusals, Queen Mary University of London (QMUL) is still ultimately responsible for those refusals. They have the power to approve requests, and/or smack White on the nose for his continued ridiculous behavior which is making QMUL look dodgy and hypocritical regarding their endorsement of open access to trial data.

Hence I think it's extremely important to put public pressure on QMUL regarding the PACE trial and FOI requests. One way to do that is by liking and retweeting PACE tweets where @QMUL is tagged, or by adding @QMUL to such tweets in the first place.

And the suggestion from @Hip to get into dialogue with the administration is a good one, though I think it's likely that they've already been trained to think of us as militant anti-psych patients with a psychosomatic disorder. Hence any attempt at dialogue would have to be very public, again to add the incentive for them to listen and respond.

 

[MeSci]

Regarding who is involved with the FOI requests, here's some info:

https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043579/fs_50558352.pdf

I just did an internet search for 'qmul Records & Information Compliance' and got several hits that look useful. Here are some:

http://www.arcs.qmul.ac.uk/governance/information-governance/index.html
http://www.arcs.qmul.ac.uk/governance/information-governance/records-management/index.html
http://www.its.qmul.ac.uk/Documents/Governance/SOPs/142319.pdf

 

[TiredSam]

White acknowledges the legal responsibility he has to respond to requests, these take him away from other important responsibilities such as providing responses to Parliamentary Questions from both Houses, finalising the publications which remain, oversight of the current trial of a self-help treatment for patients suffering from CFS/ME, oversight of his research into the causes of this condition and undertaking all of his other academic and clinical duties.

Apart from responding to Parliamentary Questions, non of the other things in that list are important responsibilities at all, they are things that he could simply stop doing, thousands of people wish he would. He is a vexatious researcher whose "research" is placing a considerable burden on PWME.

 

[MeSci]

Honestly, if this is all such a burden for White and QMUL, then they need to do the quick, cheap, easy thing and release the data.

It seems relevant to refer back to a post from last year about FOI and PACE which says, among other things:

We do not hold the precise data you have requested i.e. for recovered
patients. To provide this would exceed the appropriate limit as defined by
the Freedom of Information and Data Protection (Appropriate Limit)
Regulations 2004. For your information this is £450, calculated as the
estimated cost of one person spending 18 hours in determining whether the
information is held, then locating, retrieving and extracting the
information. Section 12 of the Freedom of Information Act 2000 therefore
makes provision for public authorities to refuse such requests.

I note that there is an apparent contradiction in that they first say that they don't hold the data but then that someone would need to determine whether the info is held.

I wonder how much they have spent now...?