PACE Data

[Ian123]

An FOI (freedom of information) request for data from the PACE trial was deemed "vexatious"

by QMUL (Queen Mary University London) and refused access.

Appealing the decision at the ICO (Information Commissioner's Office) a judgement was made ico.org.uk/media/action-wev... ordering release of the requested data.

QMUL are appealing the decision (23rd November) gov.uk/government/uploads/s... a date will be set shortly when the case will be heard by HM Corts and Tribunal Service.

In a separate case professor James Coyne requested data from a 2012 paper in PLOS ONE journals.plos.org/plosone/a... as part of the agreement that the paper was published in the journal was access to relevant data. This request was refused linkis.com/com/xdxYg although it was not an FOI request it was treated as such by the university holding the data.

PLOS ONE now have a decision on upholding their own policy

plosone.org/annotation/list... with a scientific community watching on this decision will have an impact beyond those interested in PACE trial data.

[readerlist]

KCL kcl.ac.uk/ioppn/about/diffe... credibility at risk in partnership with South London and Maudsley

NHS Foundation Trust relying on secondary mediation data for funding recommended treatments.

[Driftwood-bay in reply to readerlist]

All clinics using NICE guidelines are compromised in my opinion.

[Theresa60 in reply to Driftwood-bay]

Very true though over time I have suffered many disappointments with what should have happened my trust in the right outcome is only small .

[Seascape]

Influence within our health services remains strong I believe Max Planck was right when he said "Truth never triumphs — its opponents just die out"

[Effort in reply to Seascape]

Requests beyond the areas influenced virology.ws/2015/12/17/a-re... are removing opponents faster than natural selection.

[Len607 in reply to Effort]

Dragging universities kicking and screaming into the twenty first century from their ivory towers that dispense research findings for funding.

[CheshireKatz in reply to Len607]

With some barbed comments an ex editor at the bmj supports the call for data release blogs.bmj.com/bmj/2015/12/1...

[Cloudedout in reply to CheshireKatz]

Hardest words - sorry we were wrong.

[Jonesbones]

They would say that, wouldn't they?

ncbi.nlm.nih.gov/pmc/articl...

[ringading]

Researchers have data mining wrong with data is mine alone. Release public funded data for independent review (not by UK psychiatrists) in public / sciences interests this happens soonest.

[KMC442]

Release the data and validate a real illness in my lifetime.