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College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules

BMJ 2013; 347 doi: http://dx.doi.org/10.1136/bmj.f5355 (Published 30 August 2013) Cite this as: BMJ 2013;347:f5355
  1. Clare Dyer
  1. 1BMJ

The UK Information Rights Tribunal has ruled that the University of London’s Queen Mary college was right not to disclose the discussions of research committees on a clinical trial of treatments for chronic fatigue syndrome (myalgic encephalomyelitis), in an important ruling concerning the importance of academic freedom.

The tribunal upheld the information commissioner’s decision that Queen Mary was entitled to withhold the minutes of meetings of the steering committee and management groups for the PACE (Pacing, Graded Activity, and Cognitive Behaviour Therapy—a Randomised Evaluation) trial, which looked at the effectiveness of treatments for chronic fatigue syndrome.

The £5m (€6m; $8m) trial, funded mainly by the Medical Research Council and led by Queen Mary, followed 641 patients, looking at the safety and efficacy of the various treatments available in the United Kingdom. A paper published in the Lancet in March 2011 concluded that cognitive behaviour therapy and graded exercise therapy could be effective.1

The paper resulted in what the Lancet described in an editorial as “an outpouring of consternation and condemnation from individuals or groups outside our usual reach.”2 Much criticism came from people with chronic fatigue syndrome, some of whom resisted the suggestion that psychological therapies could help alleviate their condition.

John Mitchell made a request in July 2012 under the Freedom of Information Act for the meeting minutes, although he was aware that Queen Mary had previously received and rejected an identical request. His request was refused on the basis that disclosure would inhibit the free and frank provision of advice and the free exchange of views.

Queen Mary’s principal, who made the decision, took account of a submission that argued that releasing the minutes could have major implications for how trials were conducted on a national level in the future; would alter the way trials were run; and would affect the quality of the minutes of meetings such as this one in dealing with controversial areas of medicine. The submission also argued that previous releases of information under the Freedom of Information Act had already damaged and delayed the trial.

The information commissioner agreed that Queen Mary was entitled to withhold the minutes on the grounds of public interest, and Mitchell appealed to the Information Rights Tribunal.

Judge Christopher Hughes, who chaired the tribunal, said that the request was “part of a campaign which has now extended to the use of FOIA [the Freedom of Information Act] as a means of advancing an argument which in essence has roots in clinical medicine and in a black and white view of the mind-body problem.”

He added, “There is a view among some members of the CFS/ME [chronic fatigue syndrome/myalgic encephalomyelitis] community that the distressing disorder which they suffer from has a simple and straightforward physical cause which if properly researched will lead to a cure. They view any diversion from that as wasteful and indeed duplicitous.”

There had been “deeply wounding personal criticism” of individuals involved in the research, and over the years some of these people had withdrawn from research in the face of “hostile, irrational criticism and threats,” he said.

The tribunal upheld the commissioner’s decision and went on to declare that the underpinning of academic freedom by UK statute law and human rights conventions should be given appropriate weight in such decisions.

The Charter of Fundamental Rights of the European Community and the UK Education Reform Act 1988 “help articulate the profound importance of academic freedom in particular in the area of scientific research and the need for universities to protect it scrupulously and for due weight to be given to academic freedom in considering where questions of public interest lie,” the judge said.

The tribunal also had “no doubt” that when viewed in its context the request should have been regarded as not a true request for information and should have been struck out as vexatious.

Notes

Cite this as: BMJ 2013;347:f5355

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