6min walking test data - Recovered patients in PACE trial

Anna Sheridan made this Freedom of Information request to Queen Mary University of London

This request has been closed to new correspondence. Contact us if you think it should be reopened.

The request was refused by Queen Mary University of London.

Dear Queen Mary, University of London,

I am writing to request follow-up data for the 6 min walking
test,(as reported in the original PACE paper). I understand that you have 'follow-up data on 72% of participants for this test' (White et al. 2013, Psychological medicine, and 2011). I feel that having data for almost three quarters of participants will still be of value.

I request this information as both a scientist and as an ME patient. As a scientist, my principle aim is to gain a complete understanding of the effect of any proposed treatment. As an ME patient, the distance that I can walk is extremely important to me, and any improvement that can be offered through treatment is of great interest.

There are two parts to my request. Firstly, could you please supply the mean 6min walking test time for all those who took the measurement, and were deemed 'recovered' as per one of the measures in your follow-up paper in Psychological Medicine.

Secondly could you please also provide the standard deviation for the mean. I would also like this data to be broken down into therapy type.

Regarding the concerns expressed in your Psychological Medicine Response: The data I request will be compared only to the data already published in the PACE trail (2011) paper, therefore any differences in protocol compared to the literature at large, are not relevant. In addition, your directions to patients that `You should walk continuously if possible, but can slow down or stop if you need to.’ (White 2013), will, I presume have been unnecessary for, and had no impact on, the patients for whom I request data, since they are, as you have stated, 'recovered'.

Yours faithfully,

Anna Sheridan (Dr)

[Shared] Is Foi, Queen Mary University of London

We acknowledge receipt of your request and will respond as soon as we can.

QM FOI Enquiries, Queen Mary University of London

Dear Dr. Sheridan

Thank you for your email of 3rd September related to the PACE trial.

Queen Mary is refusing this request under s.14(2) of the Freedom of Information Act 2000 as we regard it as a repeat of your request of 28th March, where we advised that the data is not held.

Please accept this as a refusal notice.

If you are dissatisfied with this response, you may ask the College to conduct a review of this decision. To do this, please contact the College in writing (including by fax, letter or email), describe the original request, explain your grounds for dissatisfaction, and include an address for correspondence. You have 40 working days from receipt of this communication to submit a review request. When the review process has been completed, if you are still dissatisfied, you may ask the Information Commissioner to intervene. Please see www.ico.gov.uk for details.

Yours sincerely

Paul Smallcombe
Records & Information Compliance Manager

Dear Queen Mary, University of London,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Queen Mary, University of London's handling of my FOI request '6min walking test data - Recovered patients in PACE trial'.

I am writing to request follow-up data for the 6 min walking
test,(as reported in the original PACE paper). I understand that
you have 'follow-up data on 72% of participants for this test'
(White et al. 2013, Psychological medicine, and 2011). I feel that
having data for almost three quarters of participants will still be
of value.

I request this information as both a scientist and as an ME
patient. As a scientist, my principle aim is to gain a complete
understanding of the effect of any proposed treatment. As an ME
patient, the distance that I can walk is extremely important to me,
and any improvement that can be offered through treatment is of
great interest.

There are two parts to my request. Firstly, could you please supply
the mean 6min walking test time for all those who took the
measurement, and were deemed 'recovered' as per one of the measures
in your follow-up paper in Psychological Medicine.

Secondly could you please also provide the standard deviation for
the mean. I would also like this data to be broken down into
therapy type.

Regarding the concerns expressed in your Psychological Medicine
Response: The data I request will be compared only to the data
already published in the PACE trail (2011) paper, therefore any
differences in protocol compared to the literature at large, are
not relevant. In addition, your directions to patients that `You
should walk continuously if possible, but can slow down or stop if
you need to.’ (White 2013), will, I presume have been unnecessary
for, and had no impact on, the patients for whom I request data,
since they are, as you have stated, 'recovered'.

A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.whatdotheyknow.com/request/6...

Yours faithfully,

Anna Sheridan

QM FOI Enquiries, Queen Mary University of London

Dear Dr. Sheridan

If we are to carry out an internal review, please could you set out with what aspect of our response you are dissatisfied.

Yours sincerely

Paul Smallcombe

Dear QM FOI Enquiries,

Thank you for your e-mail. I believe that QM have the data requested, or could very easily calculate the data requested, and therefore the FOI should not be refused.

Yours sincerely,

Anna Sheridan

QM FOI Enquiries, Queen Mary University of London

Dear Dr. Sheridan
 
I apologise for the delay in responding but QMUL has now conducted a
review of your request under the Freedom of Information Act 2000. The
review indicates that the information you requested on 03/09/2013 is not
held as these analyses were not performed previously as part of the PACE
trial. Insofar that it could be possible to calculate the data from data
which is held, we estimate that to do so would exceed the appropriate
limit as defined by the Freedom of Information and Data Protection
(Appropriate Limit and Fees) Regulations 2004. Your request is therefore
refused under s.12 of the FOIA.
 
For your information the appropriate limit 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 FOIA therefore make provision for public
authorities to refuse such requests.
 
The processes would include work of a statistician to perform the various
programming and data file operations as well as the calculations to
produce accurate data. Moreover, as there is no longer a statistician
employed by the PACE trial, one would need to be recruited for this
operation and trained.
 
If you remain dissatisfied you have the right to complaint to the
Information Commissioner's Office; please see [1]www.ico.org.uk for
details.
 
Yours sincerely
 
Paul Smallcombe
Records & Information Compliance Manager
 

References

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