Update on the PACE Trial participant numbers.
It seems that the person who made the FOI requests for the participant numbers for each centre from each individual NHS Trust involved in the PACE Trial was provided with incorrect information by the Barts Health NHS Trust. This Trust returned the figure of 67 for the Bart's PACE Trial centre which now appears to be wrong.
A FOI request to QMUL for the complete set of participant numbers eventually yielded the full set of figures. I say eventually because QMUL at first refused to provide the information, saying that giving the numbers out could mean that Trial participants could then potentially be identified from information in the public domain, so this would be a breach the first data protection principle. They released the information after a complaint was made to the ICO and the ICO contacted them. The figures QMUL then provided were as follows:
Barts - 135
Edinburgh - 113
Kings - 110
Oxford - 108
Royal Free - 111
Bristol - 63
[TOTAL: 640]
When Barts Health NHS Trust was subsequently informed that their participant number appeared to be wrong and were asked to supply the correct information, they replied saying that they had obtained the information from the Trust’s and Queen Mary University of London’s Joint Research Management Office. How odd. Why would they give out the wrong number?
NB Barts Health NHS Trust also didn’t respond within the 20 days to a request for the participant numbers for the King’s Centre. (See below for why this FOI request was made). For both of these centre numbers (i.e. for the Bart’s number and the King’s number) the requester was eventually told by the Barts Health NHS Trust to approach QMUL.
The participant numbers obtained by FOI requests to the separate NHS Trusts were as follows:
Barts – 67 (an email was sent to Barts Health NHS Trust to check that this was the total from both Bart’s services and their reply suggested it was)
Edinburgh – 113 (obtained on appeal – they found that a member of staff was able to access an online database)
King’s – strange ‘zero’ response (see below)
Oxford – 108
Royal Free – 111
Bristol – 74 (with 4 lost to follow up)
The trials and tribulations associated with requesting the King’s Centre number
When the FOI request was first made to King's College Hospital NHS Foundation Trust they replied saying that, although they held the data they weren’t the data controllers ‘for the majority of it’ so to try Bart’s. An appeal/request for review was made to them and they responded saying that they may be able to access the study if the requester could supply a REC/IRAS number for the PACE Trial. The REC number was provided. Their response to this was to say that they had accessed the study and that King's College Hospital was never opened as a site to this trial so zero patients were recruited at King’s! When a second review was requested, pointing out that the participant newsletters indicated that King’s did recruit to the PACE trial, they replied saying that they didn’t hold the required data and to go to Bart’s. But since in one email they had said that the patients would have been recruited at the Maudlsey Hospital, not King’s, a request was first made to the South London and Maudsley NHS Foundation Trust. They too replied saying that they didn’t have the information and to go to the researchers.
The request for the King’s participant number was made to Bart’s at the end of June. They finally responded to this request on 8th September, saying that the requester should approach QMUL for the information.