#mecfs #PACEgate Peter White: "Perhaps most damaging of all have been requests by two trial ex-participants..." Oct-Nov 2015 #NHS #DWP #KCL #QMUL

https://consult.justice.gov.uk/foi-commission/call-for-evidence/supporting_documents/callforevidenceenglish.pdf

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/487271/Online_Responses_CitizenSpace.xls

What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36? - What protection should there be for information relating to the internal deliberations of public bodies? For how long after a decision does such information remain sensitive? Should different protections apply to different kinds of information that are currently protected by sections 35 and 36?

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Professor Peter White

Queen Mary University of London


It is an important principle of science that internal deliberations should be undertaken in a "safe space", allowing for freely expressed arguments for and against decisions made in planning and implementing a scientific study. It is equally important that such decisions, and the reasons for making them, are recorded formally and accurately, so that these documents can be used as source references used at the time of writing up and publishing research. This would not be possible, or would be very limited, if such minutes of such meetings were known to be liable to public release. This would have a "chilling" effect on open discussion This is particularly the case in Medicine where the principle of patient involvement in research is so valuable - individual patients and patient organisations are vulnerable to abuse and harassment if their names were to be made public as part of such minutes. Making such data exempt from the Act would protect scientific work in controversial subjects within and outside of medicine. Please refer to Information Tribunal decision notice Appeal No: EA/2013/0019, where Judge Hughes outlines these arguments in more detail, in an appeal regarding a medical research trial that I led (see answers to question 6).

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Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden? - Is the burden imposed on public authorities under the Act justified by the public interest in the public’s right to know? Or are controls needed to reduce the burden of FoI on public authorities? If controls are justified, should these be targeted at the kinds of requests which impose a disproportionate burden on public authorities? Which kinds of requests do impose a disproportionate burden?

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"I am the principal investigator (PI) of the PACE trial, the main findings of which were published in the Lancet medical journal in 2011 (White PD et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823-36. doi:10.1016/S0140-6736(11)60096-2). I write here in my personal capacity.

The PACE trial is a trial of four treatments for patients suffering from chronic fatigue syndrome (CFS), which is sometimes called myalgic encephalomyelitis (ME). CFS is a controversial condition, and attracts a strong patient activist voice. This group has used the FoI Act many times since this main paper was published, asking for all sorts of data, from the minutes of all meetings overseeing the trial to all of the patient data collected. See the following for a description of activism (http://www.bmj.com/content/342/bmj.d3780)

The administration of these requests has caused a very significant burden on the University's FOIA manager, the University's academic department of law, and myself as PI. I have had to spend a considerable amount of time addressing the requests, advising colleagues, collating the views of my research colleagues at other universities, and writing witness statements for the various appeals (internal, ICO and IT). This means that my further research into the causes and treatments of this debilitating and misunderstood illness has been delayed. Paradoxically, the time taken up in this has delayed publication of the papers that contain some of the very data that have been requested.

Perhaps most damaging of all have been requests by two trial ex-participants to ""destroy"" all their data collected on them during the trial because of their concern that the data will not be held securely and confidentially, something we promised them to do as part of their giving informed consent. The first such request was received after we had finished all trial data collection and had started the main analysis. After some months of trying to obtain advice on what to do, we were advised to destroy this ex-participant's data, which we did (and which took some time to do due to the complexity of the data), but this meant that we had to restart the analysis, which caused several month's delay in publishing the main results paper in 2011. This paper was important since it showed that there were two treatments for this condition which were safe and moderately effective. It is estimated that some 250,000 people suffer from CFS in the UK.

Section 22a of the Act is insufficient protection for science into controversial subjects, and requires that the research is on-going, so is irrelevant to completed research. We need science in the UK to be protected or it will continue to be damaged as this trial has been (other examples include climate change science, and research into the health effects of tobacco). Exempting Universities from the FOIA would achieve that. Exempting scientific research data produced by Universities and other higher educational institutes might be a workable alternative."

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16 Claire Amor Health and Care Professions Council No. Current protections are sufficient. We have never used or tried to use the exemption as we are pro transparency. If you have nothing to hide this is not an issue

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https://www.gov.uk/government/people/peter-white

http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_fatigue_the_active_way.html

http://www.virology.ws/mecfs/

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