Academic Freedom and FOI

Pointed observations in a judgment which are not directly related to the matters pleaded are usually worth noting. Those in a recent case involving the PACE trial and Queen Mary, University of London, are essential reading for academics and support staff who deal with FOI

In a ruling handed down this week the First-tier Tribunal (Information Rights) (“FTT”) has upheld the Information Commissioner’s (IC) decision that Queen Mary, University of London, was entitled to rely on the exemption at section 36(2)(b)(1) and (2) of the Freedom of Information Act 2000 in refusing to disclose minutes of the Trial Steering Committee and Trial Management Groups of the Pace Trial. The trial had been set up to compare and test the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), but it attracted considerable criticism from some quarters. In the words of the FTT

There has been a storm of comments about this study. There had been deeply wounding personal criticisms of individuals concerned and over the years individuals in this field of research and treatment have withdrawn from research in the face of hostile irrational criticism and threats.

The FTT found that the exemption was engaged:

it is pellucidly clear that the progress and conduct of research in this area would be hampered by the publication of minutes of meetings such as sought by this request because individuals would be less willing to engage in research, participate in steering committees, provide guidance, debate issues about the conduct of research as fully and frankly as they otherwise would; as fully and frankly as would most benefit the research and the patients it is intended to help

and the public interest favoured maintaining the exemption:

the appellant’s arguments in favour of disclosure of the minutes when so much has been made available publicly in relation to this research and been subjected to such high levels of independent scrutiny do not outweigh the considerable weight to be given to the public interest in maintaining the safe space for academic research

But the FTT then made wide-ranging and significant observations about the concept of academic freedom and its relation to FOI. The decision cites Article 13 of The Charter of Fundamental Rights of the European Community:

Freedom of the arts and sciences The arts and scientific research shall be free of constraint. Academic freedom shall be respected.

and section 202 of the Education Reform Act 1988 which places an obligation on the University Commissioners to

ensure that academic staff have freedom within the law to question and test received opinion, and to put forward new ideas and controversial or unpopular opinions, without placing themselves in jeopardy of losing their jobs or privileges they may have their institutions

and the FTT stresses the “profound importance” of academic freedom, noting that the IC has an obligation, as an emanation of the state, to give effect to Article 13. The judgment notes that the purpose of universities is to disseminate and generate knowledge and that disclosure of information is their primary purpose (“the activity which imbues the University with its moral significance”). In rather remarkable terms, the seeking of and disclosure of information (from academic institutions) under FOIA is unfavourably compared to this academic dissemination:

A parallel process of dissemination through FOIA is unlikely to be as effective or robust as the process of lectures, seminars, conferences and publications which are the lifeblood of the University. They are likely to be a diversion from the effective evaluation, publication and scrutiny of research through the academic processes. All too often such requests are likely to be motivated by a desire not to have information but a desire to divert and improperly undermine the research and publication process – in football terminology – playing the man and not the ball

One might pause to question whether this unfairly overplays the likelihood of FOIA requests being detrimental to academia, and also overstates the amount of information which is disseminated to the general public through academic research. Part of the reason for FOIA is that it enables the public to access information that public authorities specifically choose not to proactively disclose. One sees similar arguments at play in the apparent prioritising of the “transparency agenda” over FOIA disclosure.

There follows, though, a sensible suggestion for what researchers might consider at the outset of projects. With a view to the obligation to publish and maintain a publication scheme, institutions are advised that

it might well be worth considering at the start of a major project such as this setting out a publication strategy identifying what materials will be produced in the course of the project, which materials will be published and when (this will enable s22 to be considered if FOIA requests are received for such material), and which are unlikely to be published under FOIA as exemptions may be engaged

and the IC is (again with a nod to his Article 13 obligations) prompted to issue guidance on this.

Finally, the judgment suggests that the University missed a trick with this specific request

properly viewed in its context, this request should have been seen as vexatious- it was not a true request for information-rather its function was largely polemical and as such in the light of recent Upper Tribunal judgements might have been more efficiently and effectively handled if treated as vexatious

The Tribunal Judge, Christopher Hughes, has a wealth of experience in the field of academic and medical research. These are crucial observations about the relationship between FOI and academia. We already have a new exemption on its way specifically for academic research (by way of clause 19 of the Intellectual Property Bill) but this decision appears to reinforce the protection that academic research and associated information will be given from FOIA disclosure.

Postscript:

The BMJ has an article on this judgment (behind the paywall, but letters in response are here (thanks to Zuton who has commented below for drawing this to my attention).

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8 Comments

Filed under Freedom of Information, Further education, Information Commissioner, Information Tribunal, Uncategorized

8 responses to “Academic Freedom and FOI

  1. Chris Pounder

    “Pellucidly clear?” er – of course its clear

  2. Zuton

    “it might well be worth considering at the start of a major
    project such as this setting out a publication strategy identifying
    what materials will be produced in the course of the project, which
    materials will be published and when (this will enable s22 to be
    considered if FOIA requests are received for such material), and
    which are unlikely to be published under FOIA as exemptions may be
    engaged” This seems a strange comment from the judge, considering
    the fact that this request was largely focussed on getting
    information about why the researchers had changed their views on
    what data would be released in the middle of the trial. The PACE
    trial had published a protocol which laid out how results were to
    be released, but they are now refusing to release data in this
    manner:
    https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
    The most worrying part of this judgement is that it now seems
    acceptable to treat a FOI request as vexatious because it is
    related to CFS, rather than because anything the person making the
    request has said or done. CFS is a controversial area, and some of
    those working in this area have been trying to promote the view
    that their critics are just unreasonable and militant. It seems
    that this viewpoint is now being accepted as accurate by judges
    based upon articles and opinion pieces which lack any good evidence
    to support the claim – circular justifications reinforcing one
    another. An earlier judgement on this matter had presented the view
    that another individual who had made a similar request as having
    some anti-psychiatry views, but that Mr Mitchell’s submission was
    well cited and reasonable, albeit not enough to overcome the
    arguments in favour of keeping these transcripts private. That
    Christopher Hughes is now claiming that Mr Mitchell’s complaint
    “was not a true request for information-rather its function was
    largely polemical”, without providing any evidence to support this
    claim, seems deeply unfair on Mr Mitchell, and potentially, on any
    other CFS patient interested in gaining access to more information
    about their condition and how it is treated through the
    FOIA.

  3. adrian

    An earlier judgement concerning the same trial came to a
    different view conclusion about academic freedom.
    http://www.bailii.org/uk/cases/UKFTT/GRC/2013/2012_0229.pdf Para 22
    “To the extent that the University’s argument includes an assertion
    that disclosure under FOIA would impinge upon academic freedom and
    that those collecting the data should have academic freedom to
    choose what to publish, where and when for reasons of academic
    prestige regardless of the public interest; where the research has
    been conducted with the use of public funds, we reject this. We
    consider academic freedom to relate to the freedom to pursue
    research wherever the evidence takes a researcher and the freedom
    to disseminate, publish and teach no matter how unpopular and
    controversial the conclusions. That academic freedom must be viewed
    in the context of the public interest is clear from the structure
    of s22 FOIA which is subject to the public interest test” On the
    judges suggestion that what will be published should be defined
    early, some of this is specified in the trial protocol. One of the
    reasons this trial has been challenged and FoI requests made is
    that what was published was not what was specified in the published
    trial protocol. The reason for prepublishing the protocol is to
    prevent scientists and drug companies cherry picking results to
    publish. Hence the all trials campaign by Ben Goldacre to insist
    protocols are registered and published. However this is pointless
    if academics are simply allowed to rewrite the trial endpoints and
    change the protocol. Queen Mary’s say it is notrmal to change the
    protocol but I believe that the type of changes that are normal are
    things like changing which significance test is used after looking
    at the distribution of the data rather than changing the endpoints.
    The scary thing about this ruling is it seems to give academics the
    freedom to cherry pick which results they report without the need
    to worry about FoI requests.

  4. Zuton

    There is a continuing discussion of these matters at the
    BMJ here: http://www.bmj.com/content/347/bmj.f5963?tab=responses
    (All open access). Most recent example: It is wrong to prevent
    patients from making informed decisions about their medical care 26
    November 2013 Sean Lynch reports that, in his view, the protocol
    changes for the PACE trial appear well justified[1]. However, the
    accuracy of the factual claims used by the PACE trial researchers
    to explain their post-hoc outcome measures should be checked. The
    PACE trial’s published protocol defined ‘recovery’ as requiring an
    SF-36 Physical Functioning (SF36-PF) questionnaire score of at
    least 85 out of 100, while the trial’s entry criteria required a
    score of 65 or under, which was taken to indicate that patients’
    fatigue was disabling[2]. The post-hoc criteria for recovery
    allowed patients with an SF36-PF score of 60 to be classed as
    recovered. This change was justified by the claim that a threshold
    of 85 would mean “approximately half the general working age
    population would fall outside the normal range.”[3] In fact, the
    data cited showed that the median score for the working age
    population was 100, less than 18% of the general working age
    population had a score under 85, and 15% had declared a long-term
    health problem[4,5]. An SF36-PF score of 60 was claimed in the
    Lancet PACE paper to be the mean -1sd of the working age
    population, and thus a suitable threshold for ‘normal’
    disability[6]. They had in fact used data which included all those
    aged over 65, reducing the mean physical function score and
    increasing the SD[4]. For the working age population the mean -1sd
    was over 70, requiring patients to score at least 75 to fall within
    this ‘normal range’[5]. Also, the trial’s protocol makes it clear
    that the thresholds for recovery (including ≥85 for SF-36 PF) were
    intended to be more demanding than those for the mean -1sd,
    reporting that: “A score of 70 is about one standard deviation
    below the mean… for the UK adult population”[2]. The post-hoc
    criteria for recovery so clearly overlapped with the trial’s own
    criteria for severe and disabling fatigue that an additional
    element needed to be introduced, mandating that ‘recovered’
    patients not also fulfil every aspect of the trial’s criteria for
    CFS[3]. Even so, patients could still have been classed as
    recovered when reporting no change, or even a decline, in either
    one of the trial’s primary outcomes. Even using the loose post-hoc
    criteria for recovery, only 22% of patients were classed as
    recovered following treatment with specialist medical care and
    additional CBT or GET[3]. Regardless, the BMJ had reported that
    PACE showed CBT and GET “cured” 30% and 28% of patients
    respectively[7], a Lancet commentary claimed that about 30%
    recovered using a “strict criterion” for recovery[8], and a paper
    aimed at NHS commissioners stated PACE indicated a recovery rate of
    30-40% for CBT and GET[9,10]. It is wrong for such misstatements of
    fact to be allowed to go on affecting how doctors treat their
    patients, how funding decisions are made, and the information that
    patients are provided with before deciding whether to consent to
    particular interventions. The changes to the outcome measures used
    in the PACE trial may not be “representative of a hidden
    agenda”[1], but they were misguided, justified by inaccurate
    claims, and have been misleading to others. The refusal to allow
    patients access to data on the outcome measures laid out in the
    trial’s protocol reflects a sad dismissal of their right to be
    informed about the medical treatments they are being encouraged to
    pursue[11,12,13]. Lynch goes on to recommend the use of pragmatic
    trials as a way forward for CFS/ME research[1]. This is unlikely to
    be helpful. In response to the paper cited by Lynch, professor of
    complementary medicine Edzard Ernst pointed out that: “drawbacks
    might mean that the cmRCT generates false positive results. I can,
    for instance, imagine a pure placebo, like homeopathy, coming out
    of such a test smelling of roses.”[14] There was a time when it was
    claimed by some that homeopathy was a promising medical treatment.
    It is now more widely recognised that homeopathy can simply affect
    how patients report their symptoms in non-blinded trials, and that
    it is not ethical to promote it as a legitimate form of medicine.
    In the case of cognitive and behavioural interventions for CFS/ME,
    we have evidence from the PACE trial that they are able to lead to
    modest improvements in patient questionnaire scores in a
    non-blinded trial, without leading to improvements in real world
    outcomes such as employment rates, or claims for disability
    benefits[15]. A meta-analysis of actometer data from CBT trials for
    CFS also found that CBT was able to lead to improvements in
    questionnaire scores in non-blinded trials, but not to improvements
    in the amount of activity that patients were actually able to
    perform[16]. Sadly, the PACE trial dropped actometers as an outcome
    measure, although they were purchased and used at baseline[17].
    Recent evidence from a large study of NHS CFS/ME specialist
    services indicated that reported results for CBT and GET are poorer
    than those reported in PACE, and that centres offering CBT and GET
    achieved marginally worse results than centres offering ‘activity
    management’[18]. We do not currently have compelling evidence that
    CBT or GET are more effective medical interventions for ME/CFS than
    homeopathy, despite some of the claims made by proponents. It
    should be seen as no more acceptable for those with financial,
    professional or ideological interests in promoting CBT or GET as
    treatments for ME/CFS to exaggerate the value of these
    interventions than it is for others to exaggerate the value of
    homeopathy. Anyone with a real interest in helping patients with
    ME/CFS, and in allowing them to make informed decisions about their
    own health care, should now call for the release of results for all
    of the outcomes laid out in the PACE trial’s published protocol[2].
    [1] Lynch S. Re: PACE trial authors’ reply to letter by Kindlon.
    BMJ Rapid
    Response.http://www.bmj.com/content/347/bmj.f5963/rr/671093 [2]
    White PD, Sharpe MC, Chalder T, DeCesare JC, Walyin R: Protocol for
    the PACE trial: a randomised controlled trial of adaptative pacing,
    cognitive behaviour therapy and graded exercise as supplements to
    standardised specialist medical care versus standardised specialist
    medical care alone for patients with the chronic fatigue
    syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol
    2007, 7:6 [3] White PD, Johnson AL, Goldsmith K, Chalder T, Sharpe
    MC. Recovery from chronic fatigue syndrome after treatments given
    in the PACE trial. Psychol Med 2013;1-9, published online 31 Jan.
    doi:10.1017/S0033291713000020. [4] Bowling A, Bond M, Jenkinson C,
    Lamping DL. Short form 36 (SF-36) health survey questionnaire:
    which normative data should be used? Comparisons between the norms
    provided by the Omnibus Survey in Britain, The Health Survey for
    England and the Oxford Healthy Life Survey. J Publ Health Med 1999,
    21: 255–70. [5] Office of Population Censuses and Surveys. Social
    Survey Division, OPCS Omnibus Survey, November 1992. Colchester,
    Essex: UK Data Archive, September 1997. SN: 3660,
    http://dx.doi.org/10.5255/UKDA-SN-3660-1 [6] White PD, Goldsmith
    KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess
    M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M,
    O’Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M. Comparison of
    adaptive pacing therapy, cognitive behaviour therapy, graded
    exercise therapy, and specialist medical care for chronic fatigue
    syndrome (PACE): a randomised trial. Lancet 2011;377:823-36. [7]
    BMJ Short Cuts: ‘All you need to read in the other general
    journals’ BMJ 2011;342:d1168 [8] Knoop H, Bleijenberg G. Chronic
    fatigue syndrome: where to PACE from here?. Lancet 2011; 377:
    786-788. [9] Collin SM, Crawley E, May MT, Sterne JAC, Hollingworth
    W: The impact of CFS/ME on employment and productivity in the UK: a
    cross-sectional study based on the CFS/ME national outcomes
    database. BMC Health Serv Res 2011, 11:217. [10] Interview with Amy
    Chesterton and Esther Crawley. Available at
    http://www.thenakedscientists.com/HTML/content/news-archive/news/2384/
    [11] Freedom of Information request
    http://www.meassociation.org.uk/?p=6171 [12] Freedom of Information
    response
    http://www.meassociation.org.uk/wp-content/uploads/2011/06/FOI from
    Queen Mary.pdf [3] [13] Follow up Freedom of Information request:
    https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po
    [14] Ernst, E. The cmRCT BMJ Rapid Response.
    http://www.bmj.com/rapid-response/2011/11/02/cmrct [15] McCrone P,
    Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD.
    (2012) Adaptive pacing, cognitive behaviour therapy, graded
    exercise, and specialist medical care for chronic fatigue syndrome:
    a cost-effectiveness analysis. PLoS ONE 7: e40808. [16] Bleijenberg
    G, Prins JB, Wiborg JF, Knoop H, Stulemeijer M,. ‘How does
    cognitive behaviour therapy reduce fatigue in patients with chronic
    fatigue syndrome? The role of physical activity.’ Psychol Med. 2010
    Aug;40(8):1281-7. [17] PD White, MC Sharpe, T Chalder, JC DeCesare,
    R Walwyn, for the PACE trial management group: Response to comments
    on “Protocol for the PACE trial”
    http://www.biomedcentral.com/1471-2377/7/6/comments#306608 [18]
    Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME
    National Outcomes Database. (2013) Treatment outcome in adults with
    chronic fatigue syndrome: a prospective study in England based on
    the CFS/ME National Outcomes Database. QJM. 106:555-65. Competing
    interests: I believe that the current tolerance for preventing
    patients from accessing data on the efficacy of the treatments
    available to them will be looked back upon with a sense of real
    shame.

  5. Delightful-not-vexatious

    I thought I would provide an update on these issues, as comments on this blog have now been cited by QMUL as evidence of the vexatious campaign against the PACE trial in a new decision notice: https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf

    Also, there have been a some recent developments in academia, with a number of prominant researchers speaking out about problems with the PACE trial. Some of these are summarised and linked to here: http://www.centreforwelfarereform.org/library/by-date/in-the-expectation-of-recovery.html

    Additionally, a commentary piece in The Psychologist has briefly used the lack of transparency around the PACE trial as an example of the sort of problems holding back psychological research: https://thepsychologist.bps.org.uk/volume-29/may-2016/our-struggle-between-science-and-pseudoscience

    We are also awaiting the ruling of a new tribunal hearing on a request for PACE data:
    https://valerieeliotsmith.com/2016/04/28/qmul-v-the-information-commissioner-and-matthees-tribunal-hearing-and-open-justice/
    https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part

    Also, it seems that the PACE trial’s PI played a leading role in the recent campaign to exclude universiteis from the FOIA: https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/

  6. Delightful-not-vexatious

    As a further up-date, data on this trial released under the FOIA has now caused something of a scandal:

    General audience piece: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/comment-page-7/#comments
    Statistical re-analysis: http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/
    Comment from investigative journalist who has been looking into this trial for a number of years now:
    http://www.virology.ws/2016/09/22/trial-by-error-continued-the-real-data/
    Piece about the tribunal ruling written when it was thought QMUL may appeal:
    http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

    It is now quite clear that Judge Hughes’ 2013 decision was founded upon unpleasant prejudices about ME patients and a misguided faith in academia’s commitment to openness, honesty and accuracy.

  7. wwergey

    Thw PACE trial is now being used as an illustration of the danger of bad science in the international media. To those aware of the details, Judge Hughes ruling was clearly founded on prejudice rather than evidence, and it is becoming ever more of an embarassmnet. I think that this should be used as a case study of the way in which British insitutions can bluff the ICO and tribunals with their assertions of authority. It was only when American academics started speaking out on this issue that patient’s concerns started being taken seriously in the UK.

    Here is the New York Times covering PACE: https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

    An example from Australia praising a patients fight to use the UK’s FOIA: http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386

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