QMUL (PD White's base) claim simple request for 6-minute walk results in £5m PACE Trial "vexatious"

[Dolphin]

Dr Anna Sheridan submitted a new request on November 1, 2015:

https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new

This trial cost £5 million of UK taxpayers' money.

 

[Denise]

Dr Anna Sheridan submitted a new request on November 1, 2015:

https://www.whatdotheyknow.com/request/raw_6mwt_data_after_treatment/new

This trial cost £5 million of UK taxpayers' money.

The term "vexatious" seems to be used quite a bit by certain groups....
:thumbdown:

 

[worldbackwards]

I don't know the history of this too well. Does anyone know how many claims have been made? How many have they released data for? Any?

 

[TiredSam]

When is this small but vocal minority of vexatious researchers going to stop calling people vexatious?

Is there a size limit on a group that can be labelled vexatious, and what happens when we exceed it? It's not just a few patients who are asking for the data now, it's journalists, scientists, 10,000 petition signatories ...

This "vexatious" nonsense is looking more self-evidently ridiculous by the minute.

 

[DanME]

These people!! Is the university not ashamed of this behavior? Calling anyone vexatious (a new English word I 've learned), who disagrees or is interested in the data, declining discussions without giving any reasons, giving up all diplomacy, showing outright disgust for patient's rights and transparency.

How can this be tolerated by the dean?

 

[Esther12]

They're down the rabbit hole.

Dear Dr. Sheridan

We have carried out an internal review recently along similar lines and
decline to carry out another on this occasion.

If you wish to appeal further then you can find information on how to do
this on the website of the Information Commissioner's Office at
[1]www.ico.org.uk

Yours sincerely

Paul Smallcombe
Queen Mary University of London


References

Visible links
1. http://www.ico.org.uk/

Last time you overturned your own claim that Dr Sheridan's request was vexatious!

Dear Dr. Sheridan

Queen Mary has been conducting its internal review on this request and we
apologise for the delay. The review has determined that the request is not
vexatious.

In the light of this we have reassessed your request.

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.

Data relating to the six minute walking test has been published in summary
form in the original Lancet paper of 2011 in Table 6, please see attached.

If you remain dissatisfied you have the right to appeal to the Information
Commissioner's Office. Please see [1]www.ico.org.uk for details.


Yours sincerely


Paul Smallcombe

Records & Information Compliance Manager

References

Visible links
1. http://www.ico.org.uk/

https://www.whatdotheyknow.com/request/raw_data_for_6mwt#incoming-565751

So good that there's public info on these requests. I wouldn't believe QMUL's behaviour if I couldn't see it for myself.

 

[msf]

This is the most ridículous thing I can imagine a university (even if it is a university hospital) doing. To make it worse, they seem to think that using vocabulary from the 19th century will disguise their intellectual bankruptcy.

 

[user9876]

If QMUL were acting reasonably they would have negotiated with Anna about what information they could provide within reasonable costs. I think this is basically Anna's third attempt to get objective data associated with those who recovered. I think guidance suggests a negotiation can take place.

 

[DanME]

"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."

Seriously? A person need more than 18 hours to get the raw data from a six minutes walking test with four arms? Somewhere they have an Excel chart with all the data. I seriously doubt, that every data point was written down by hand on a different file at the opposite ends of the hospital. Even if they had to anonymize the data, if wouldn't take 18 hours. I even doubt, that they have anonymize the data, which is usually done before analyzing it.

This is outrageous.

 

[user9876]

"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."

Seriously? A person need more than 18 hours to get the raw data from a six minutes walking test with four arms? Somewhere they have an Excel chart with all the data. I seriously doubt, that every data point was written down by hand on a different file at the opposite ends of the hospital. Even if they had to anonymize the data, if wouldn't take 18 hours. I even doubt, that they have anonymize the data, which is usually done before analyzing it.

This is outrageous.

At one point their 18 hours included the process of interviewing and hiring a statistician as apparently QMUL had no one capable of doing this.

 

[SOC]

At one point their 18 hours included the process of interviewing and hiring a statistician as apparently QMUL had no one capable of doing this.

Sheesh. What happened to the principle of maintaining the data in a form that can be readily accessed if requested? Isn't that a required practice in all externally funded research? Or am I mistaken?

Why do they need a statistician to release raw data? By definition, raw data is unmanipulated, statistically or otherwise. AFAIK, no one is asking for new statistical interpretations of the existing data so no statistician required.

 

[A.B.]

Why do they need a statistician to release raw data?

It's like asking for fresh fish at the market and being told hiring a Sushi chef would take too long and cost too much.

Chances are the fish is rotten.

 

[Valentijn]

Maybe they can humbly ask a secretary to open the Excel sheet for them?

 

[TiredSam]

At one point their 18 hours included the process of interviewing and hiring a statistician as apparently QMUL had no one capable of doing this.

That I can believe.

 

[MeSci]

"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."

Seriously? A person need more than 18 hours to get the raw data from a six minutes walking test with four arms? Somewhere they have an Excel chart with all the data. I seriously doubt, that every data point was written down by hand on a different file at the opposite ends of the hospital. Even if they had to anonymize the data, if wouldn't take 18 hours. I even doubt, that they have anonymize the data, which is usually done before analyzing it.

This is outrageous.

And did you notice the bit before the bit you quoted that said

We do not hold the precise data you have requested

Then they talk about someone trying to find it.

 

[SOC]

We do not hold the precise data you have requested

Then give us the raw data you do have and we'll find it ourselves if you're such mental midgets you can't cope with your own data.

 

[user9876]

Sheesh. What happened to the principle of maintaining the data in a form that can be readily accessed if requested? Isn't that a required practice in all externally funded research? Or am I mistaken?

Why do they need a statistician to release raw data? By definition, raw data is unmanipulated, statistically or otherwise. AFAIK, no one is asking for new statistical interpretations of the existing data so no statistician required.

I think that was when the mean and standard deviation was required obviously a difficult calculation!

 

[lansbergen]

Seriously? A person need more than 18 hours to get the raw data from a six minutes walking test with four arms? Somewhere they have an Excel chart with all the data.

5 million was not enough to make a datasheet and give it a proper name.

 

[Sidereal]

18 hours lol try 18 seconds. Outrageous lies.

 

[PDXhausted]

I wonder what would happen if someone put in a request for the data along with a note that said something to the effect of "we are psych researchers and have found this trial and results really groundbreaking and interesting, and would like to attempt to replicate these results to give them more weight" (or however a researcher would say it). Do you think they'd be labeled vexatious too? Do you think they'd release the data easily?