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Authors of PACE:Link to PLOS ONE statement:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037
Authors of PACE:
"We have shared data from the PACE trial with other researchers previously".......
Does anyone know who?
And if ,say, IiME researchers were to request the data would they have grounds for access?
Authors of PACE:
"We have shared data from the PACE trial with other researchers previously".......
Does anyone know who?
And if ,say, IiME researchers were to request the data would they have grounds for access?
During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public release, even of anonymised data, is not appropriate. As a consequence, we are unable to publish the individual patient data requested by the journal. However, we have offered to provide key summarised data, sufficient to provide an independent re-analysis of our main findings, so long as it is consistent with the REC decision, on the PLOS ONE website. As such we are surprised by and question the decision by the journal to issue this Expression of Concern.
Utter nonsense. The English courts have listened to these bogus arguments and declared anonymised individual data is appropriate and should be released in the public interest.
Who is on the REC?
The QMUL response is weird. Are they suffering from memory loss. Surely they already accepted the FOI tribunal ruling that they should release some of the PACE data. So what's different about this data?
Request for data from PLOS ONE publication related to the PACE trial
At the time we approached QMUL, a Freedom of Information (FOI) request for the data from the main PACE trial [2] was ongoing. Upon completion of the evaluation of the FOI request, the Tribunal ruled that the data for the main outcomes of the trial should be released, based on their position that the identification of patients was a remote possibility. Following this decision and in line with the Tribunal’s ruling, QMUL released data for some of the primary outcomes.
In parallel to these developments, we pursued contacts with QMUL regarding the dataset for the PLOS ONE article. We also sought advice from members of the PLOS Data Advisory Board and COPE.
Expression of Concern
From our follow up with the authors and QMUL, we understand that a framework is in place to consider requests for data from the PACE trial. This framework entails direct involvement by the authors on considerations on whether the data can be shared, and imposes other restrictions that we view as incompatible with the relevant data sharing policy.
At this point, PLOS has not yet received confirmation that QMUL has established a mechanism, compatible with the relevant data policy, that would allow independent evaluation of requests to access data underlying the PLOS ONE article. Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern [5] to alert readers that the data are not available in line with the journal’s editorial policy. It is our intention to update this notice when a mechanism is established that allows concerns about the article’s analyses to be addressed while protecting patient privacy.
I wonder if there's any way of getting the MRC to respond to the claim that the PACE data sharing policy is consistent with the MRC's policies. That statement seems a bit of a stretch to me.
This was an image created using @ballard 's artwork when the tribunal ordered to release the data. I may just have to update the text to reflect what just happened today.
Also check out the archived tweets on this link from 2012. How prescient pwme were in 2012. And the PACE authors could not see the problems?
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
In other words PACE = MAJOR RESEARCH FRAUD