I don't like this press release. QMUL is still protecting their assets and seem to be sending plenty of warnings.
Statement from Queen Mary University of London (QMUL):
A Tribunal has concluded by a 2:1 majority that certain PACE trial data should be disclosed to a member of the public under the Freedom of Information Act.
Basically they say they will release the data to one person, Alem Matthees
The PACE trial was carried out according to the regulatory framework for UK clinical trials, which aims to ensure that trial participants can be confident that their information is only ever used according to their consent, and that their data is only shared under obligations of strict confidentiality. The outcomes were subject to the usual standards of peer review for published scientific research
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1) Forget about the unlocked cabinet and stolen recordings.
2) Peer review? What peer review? Were the peer reviewers bribed in any way?
3) This tells me that QMUL will be on high alert on how this data will be interpreted, and shared. They are sending warning signal that perhaps they will use legal proceedings to protect theor assets.
QMUL’s appeal against the Information Commissioner argued in favour of controlled and confidential access to patient data from the PACE trial in accordance with established policy and practice in medical research. QMUL had previously shared data from the PACE trial with other researchers only when there was a confidentiality agreement in place and an agreed pre-specified statistical plan for data analysis.
QMUL's rules:'our way or the highway' has prevented critical eyes over their data and their study conclusions. Lancet has protected them throughout. Here once more they are sending warnings, stressing 'confidentiality of data'. They are still hiding behind the concept of de-identified data to prevent the truth from coming out.
In complying with the Tribunal’s decision, we remain mindful of the interests of trial participants and acknowledge the assurance given by the Tribunal that participants will be adequately protected from personal identification by the disclosure of this information. No names or addresses of any participants have been released. We will continue to engage with other universities and bodies to debate the broader implications of the decision for clinical research
Still trying to save face here, standing their grounds and they will continue to fight for their principles. Basically they do not like it at all that they are dealing with vexatious patients and vexatious demands, but then that idea has been squashed by the ICO tribunal. They are not raising a white flag here.
