Closing the Door on Freedom

OK, here’s my take on the Freedom of Information Refusal Notice which came out a couple of days ago, not to be confused with the Tribunal outcome which (as I write) is expected imminently. Apologies for the fact that it’s about twice as long as it should be but I now have brain fog so I don’t have the intellect to edit it down! If you manage to read it, I hope you find it of interest. Me, I’m going to get some sleep….

The latest PACE Trial Freedom of Information Refusal Notice causes particular concern, not only for the PACE Trial and its implications for the future prospects of people with ME/CFS, but also for the Freedom of Information Act itself – and even for freedom of speech. The Notice incorporates twelve pages of repetitive arguments from QMUL (Queen Mary University of London, home of the PACE Trial) and three pages of what seem to me to be concise and clearly argued response from ‘the complainant’ (i.e. the guy who has made the request for information). Unfortunately, the Commissioner then goes on to reject the latter in favour of the former, apparently believing every word that QMUL have told him, i.e. that patients have launched a concerted campaign to discredit the PACE Trial by submitting a burdensome number of FOI requests in the desperate hope of finding something wrong with it and in the meantime bringing Lead PACE Investigator Prof Peter White and his staff to their knees under the resultant administrative load so that they aren’t able to do any more of their vital research. Or something like that. Their evidence is not so much a linear argument as a trip several times round the houses in the hope that if they say the same things often enough, some of them will eventually convince the Commissioner. Unfortunately, this strategy appears to have been successful.

The information the complainant requested relates to the data from the step test, an objective outcome measure which went unreported in the original PACE report but appeared in the form of a small scale graph in an appendix to one of the follow up studies. The graph appeared to show that patients receiving GET or CBT, the two treatments which the PACE researchers claim are the most effective, actually fared least well according to this measure. This is not a small detail. One of the other promised objective measures, the actometer, was dropped and the other one, the six minute walking test, showed minimal change. The complainant therefore requested to see the actual plotted values of this important graph.

QMUL responded by accepting that this data would not be onerous to supply. They also accepted that that this particular complainant had not made any previous FOI requests. Nevertheless they refused to supply the data on the grounds that the request was ‘vexatious’.

I shall do my best to explain the argument put forward for this curious response. As I say, QMUL’s evidence was all over the place but the Commissioner helpfully supplied them with a clearer – if rather tenuous – line of reasoning.

The Commissioner accepted that ‘this particular request on its own would not necessarily impose a significant burden’. However they referred to the Commissoner’s guidance on section 14 (the ‘vexatious’ clause) of the Act which states:

“If a public authority has reason to believe that several different
requesters are acting in concert as part of a campaign to disrupt
the organisation by virtue of the sheer weight of FOIA requests
being submitted, then it may take this into account when
determining whether any of those requests are vexatious.”

The guidance goes on:

“The authority will need to have sufficient evidence to
substantiate any claim of a link between the requests before it
can go on to consider whether section 14(1) applies on these
grounds.”

The Commissioner therefore considered whether the present request ‘should be considered in the context of a campaign in relation to QMUL’. You will not be surprised to learn they considered that it should. Their supposed evidence for this included the FOI requests themselves, ‘correspondence to other parties including the Lancet and the BMJ’, the use of a hashtag on Twitter #PACEtrial ‘which individuals use to promote attacks on the trial in critical and hostile language’, plus links between individuals through the Phoenix Rising forum and other websites.  The Commissioner was also satisfied that the complainant was a part of this campaign, apparently because he worked ‘with others in order to engage in discussion with the Lancet and Prof White about PACE’ (an opportunity which Prof White ignored) and made information available on the internet (including on Phoenix Rising).

This is extraordinary stuff. It suggests that if patients write letters to medical journals, it somehow invalidates their right to make FOI requests. And there was me thinking this was simply exercising freedom of speech. If a doctor writes in to criticise a paper, is that also vexatious, I wonder? Or are we patients ‘getting above ourselves’? Is that the problem?

The complainant argued that he had never used Twitter but that didn’t stop QMUL and the Commissioner including their complaint about the hashtag, apparently unaware that these are pretty much ubiquitous on Twitter. If you’re going to talk about something, you use a hashtag. It doesn’t mean you’re part of an evil plot. QMUL also complained that the hashtag ‘was not used to promote or support PACE in any way’. Now why should that be, I wonder?

The bottom line seems to be that if you’re on social media – if you’re even on the internet – you’re part of the conspiracy because you’re connected to other people with the same interests as you, in this case the analysis of the PACE trial. You are of course bound to be connected because that is the nature of the net – but in the eyes of QMUL – and now, apparently of the Commissioner – that means you’re ganging up on Prof White.

The complainant, for instance, was found to be at fault for being on Phoenix Rising. But PR is not just a discussion group about PACE. It is a mutually supportive forum where people with ME can discuss all matters related to the condition. Are people expected to stay away from such supportive forums if they wish to be advocates?

This is clearly ludicrous and begs the question as to whether the Freedom of Information Act itself needs updating. After all, it was passed in 2000, before social media really came into being. Such all-pervading interconnectedness was not envisaged at the time. Of course, the Act has just been reviewed in recent months and found to be fine as it is. But that was before QMUL started coming up with daft conspiracy theories – and the Commissioner started  accepting them.

Returning to the present case: since the Commissioner agreed with QMUL that the complainant was part of an organised movement to discredit PACE, the fact that this specific FOI request was not in itself onerous was no longer (apparently) the point. It could now be considered in the light of the overall ‘campaign’ and the effect that this was having on QMUL. Even here, QMUL acknowledged that the total quantity of requests received (37 discrete requests in all over five years) ‘could not be described as overwhelming’ yet it asserted that ‘the persistent and aggregated burden on staff had caused growing concern and had a detrimental impact’ especially on Prof White who had to deal with most of the work. ‘QMUL explained that Professor White had made it clear that after five years, the requests that had been received were causing annoyance and frustration to both his colleagues and himself’.

Of course, this workload could easily be alleviated if QMUL would simply release the anonymised data in its entirety, as a growing number of patients, patient groups, scientists and clinicians have requested. QMUL protest that the FOI requests are still coming in after five years and the implication is that it is time that concerned patients moved on. Yet the point is that the PACE investigators continue to publish papers based on the PACE data and continue to make misleading claims based on these which are then reported in the media to the detriment of patients. PACE is not a thing of the past. It is very much alive and kicking and the misinformation it continues to engender has a negative impact on the lives of many patients.

QMUL argued that ‘there was no overriding public outcry that CFS/ME research or treatments should subjected to such scrutiny’ and that only ‘a vocal minority’ were unhappy, ignoring the fact that over 12,000 people signed the petition requesting the release of the PACE data and the retraction of its claims. The implication from QMUL is that a small group of patients are obsessively picking away at the fine details of the trial, issuing FOI requests in a desperate attempt to find some way to discredit it. The Commissioner seems to accept this perspective and indeed it seems unlikely that he has any idea of the real situation: that very sick patients, sometimes working from their beds, have painstakingly dissected the fine print of the trial to expose a substantial number of often astonishing irregularities and have thereby attracted the attention of, amongst others, investigative journalist David Tuller and Rebecca Goldin, Professor of Mathematical Science & Director of Stats.org, who have both produced detailed and damning critiques of the study. Goldin concluded that the flaws in PACE’s design ‘were enough to doom its results from the start’, while eminent researcher Dr Ronald Davis of Stanford has remarked: ‘I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review’. Patients are therefore requesting release of the data not in a desperate attempt to find minor errors but as final confirmation of the trial’s ineptitude.

As far as the Commissioner is concerned, however, we are just being vexatious. He accepts QMUL’s submission concerning the burden placed on the organisation by the FOI requests and additionally accepts QMUL’s argument that to release the data on this occasion would only have the effect of encouraging further requests! It seems to me that once this argument has been accepted, it effectively prohibits release of data in response to all future requests, as the same argument will always apply – and indeed QMUL talk about trying to ‘draw a line’ under FOI requests, this in spite of the fact that they continue to publish misleading new papers based on the PACE data. Patients are expected to draw a line under our activity, but QMUL clearly do not intend to draw a line under theirs.

So there you have it. Just to recap, the argument seems to go like this: in spite of the fact that this specific request is not onerous and in spite of the fact that the complainant has not previously made an FOI request, he has been adjudged to be part of a coordinated campaign to discredit PACE (because he has talked to other people about PACE on the internet). Therefore the issue has been judged not on this specific request but on the overall burden of PACE-related FOI requests on QMUL, which are accepted not to be overwhelming but have nevertheless caused ‘disproportionate irritation and stress’ to Prof White and his team and are therefore vexatious. Therefore the request for this important piece of information is refused.

This seems to me to be a tenuous line of reasoning and is open to question at numerous stages but there is one particular point at which it seems to me to be fatally flawed. The Commissioner’s guidance on the ‘vexatious’ clause refers not to just any coordinated campaign but to ‘a campaign to disrupt the organisation by virtue of the sheer weight of FOIA requests being submitted‘. (My italics.) I do not believe that adequate evidence has been produced to prove that there is any such campaign. The argument seems to rest on a single quote from someone on the Phoenix Rising forum: “Let’s have some more FOI requests please… I always thought FOI requests were our best weapon and we need to play that card much more strongly in all areas”. The most likely intention behind this statement is to encourage the use of FOI requests to obtain information. Patients are at a great disadvantage in trying to do this – especially in a climate where even sending letters to medical journals and talking to fellow patients on the internet are apparently seen as suspicious. – and FOI requests are indeed a potentially powerful tool in this respect – except of course when they are blunted, as they presently are, by those in positions of power. An alternative interpretation might be that this person on the forum is encouraging FOI requests simply to place a heavy administrative burden on QMUL but that is an interpretation only and as this quote appears to be the only evidence of such a supposed plot – and especially as it has not been specifically linked to the complainant – it does not seem to me that a case has been made.

One does wonder how many pages of social media activity they had to plough through to find that quote, and how much burden QMUL placed upon themselves by deciding to trawl through the conversations of patients in that way: a strange thing for an organisation apparently under such a distressing administrative burden to take upon themselves.

It is worth mentioning that although recent arguments by QMUL against the release of PACE data have relied mainly on the issue of confidentiality, this is raised in only two out of the fifty-four paragraphs of their present submission, perhaps because they realize that it is not a very credible defence. Anonymised trial data is released as a  matter of course all the time. The process of anonymisation should be straightforward and the PACE data has already been released to other researchers anyway. So perhaps it is not surprising that they are now relying instead on the concerted campaign/vexatiousness argument. Perhaps they will move on to something else when that one starts to wear thin. The result of a Tribunal relating to another PACE FOI request is expected imminently so it will be interesting to see what arguments they produce on that occasion.

It isn’t easy to avoid references to Big Brother and 1984 when writing about this Freedom of Information refusal. The PACE data remains out of reach, but the online conversations of patients are inspected in fine detail by health professionals and their staff and passed to another authority. I’m sure there is nothing illegal in this but is it a decent way for those in authority to behave? Wouldn’t it be less convoluted, just easier, to release the anonymised PACE trial data in its entirety as many voices – some of them eminent- have suggested? After all, if there is nothing to hide, what is the problem? Why go to such lengths to avoid having to give the data up?

As I write this, I have the strange feeling that people from QMUL and the Information Commissioner’s Office are looking over my shoulder and indeed the way things are, it seems likely some such representatives may at some stage read this. If so, then I hope you are enjoying my blog and I would just like to ask you: suppose, just suppose (and this is, of course entirely a flight of fancy) you suffered with a poorly understood chronic illness and a trial was carried out which claimed to support a form of treatment which numerous patient surveys had found to be potentially damaging, which relied on a theory about your condition which was disproved by other research, which you therefore knew was likely to blight the lives of a great many other such patients by bringing about a long term deterioration in their health such that in some cases they would be permanently confined to bed, perhaps unable to bear the light of day or talk to their loved ones; a trial which led to a great deal of misinformation about your condition, so damaging the relationships which you and other patients had with family and friends; a trial which had already been shown to be fatally flawed in numerous and sometimes outrageous ways, as evidenced by in depth critiques by eminent people; a trial which nevertheless still set the agenda for treatment both in Britain and in many cases worldwide because most health professionals did not have the necessary time to inform themselves of the true situation – would you try to do something about it? If so, what? Might you want to discuss it with other patients online? Might you be critical of the trial when you did so? If you were competent to do so, would you wish to request the necessary data to challenge the trial’s conclusions? If coverage of the trial which you knew to be misleading appeared in the general press and medical journals, might you wish to write to correct the mistakes? Would any of these acts be unreasonable? Is it therefore right that any such acts should  be thought by those in authority to be in some way undesirable, such that they rendered you ineligible to receive information to which you should be entitled by the law of the land. Is any of this equitable? Is any of this right?

Just asking.

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15 thoughts on “Closing the Door on Freedom

  1. Well done for taking on the unpleasant task of going through all that deeply disturbing double-speak.We can only hope that it isn’t a part of a wider campaign, not only to prevent us from holding dubious research up to scrutiny, but now, with the forbidding of a key M.E expert doctor to even speak about his subject with either patients or charities and research bodies‎ (Clearly a breach of both his and our freedom of association and speech.), to remove all the professional medical assistance from patients except those positively vetted by the PACE clique.This is beginning to become a major human rights violation, with quite a number of clauses of several acts and charters being broken in regard to both patients and medical professionals who have done nothing but disagree with the view of one small clique of questionnaire spinners.I await the censure of Prof Hooper next in line of cutting off the M.E patient community from its right to life and freedom.I wonder, how ‘vexatious’ would it be, for me to issue a writ against the GMC, for depriving me of my fundamental right to speak to an acknowledged expert in my illness, of my choosing, and to engage him as an expert witness, in any future procedings,in order to secure my right to a fair trial?Regards,SteveH

    Liked by 1 person

    1. Yes, the situation regarding Dr Speight is extremely troubling, especially when you think of the children and families who are now denied his support. When reviewing the current situation, the names of Orwell and Kafka keep coming to mind – and also ‘doublethink’ which appears in Orwell’s 1984: ‘the act of simultaneously accepting two mutually contradictory beliefs as correct’, as in the PACE team criticising patients for obsessive behaviour while simultaneously scouring social media for evidence of a conspiracy against them.

      Liked by 1 person

  2. Excellent blog, as ever. To me this all highlights a pervasive question – who has the last word when concerns about patient care (past, present or future) are raised? Having been invited to submit ‘complaints’ to the NHS I faced the same issues. Somewhere in the (at that time unratified) ‘complaints procedure’ was a clause about what happens if a ‘complainant’ is ‘unreasonable’. As far as I could tell there were no clear guidelines about when a complaint was considered to be ‘unreasonable’ but it became apparent that this was decided on a case by case basis and any complaint could be closed down if the powers that be deemed that appropriate. The standard line seems to be that ‘complainants’ have to accept the NHS’s verdict and ‘agree to disagree’ once they are considered ‘unreasonable’ by the organisation concerned. This is unsatisfactory and does nothing to protect patients who are invited and encouraged to raise their concerns in the hopes that other people don’t suffer as they did. It is unlikely that anyone would go through all the work involved in a complaint if they considered their suffering (or that of a loved one) was ‘reasonable’ yet they can be judged as ‘unreasonable’ at any point.

    Concerns about the PACE Trial are, of course, on a much larger scale than an individual complaint. But the power always seems to rest with the authorities, not with the patients/public who take the trouble to raise concerns. And when even respected scientists are refused relevant information we have to wonder what on earth is going on? That those in authority spent time trawling the PR site for a quote about FOI requests – and seem to have constructed a conspiracy theory on the basis of this quote – feels unreasonable to me.

    Liked by 1 person

    1. Thanks, Polly. I think you make a fundamentally important point. Various means of redress exist yet those in authority can close them down at any point should they choose to do so. Much fuss is made of empowering patients but we only discover the limits of this new freedom when we try to use it.

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  3. The QMUL’s defensive refusal to share the ANONYMIZED data from the PUBLICLY FUNDED PACE study was lengthy and tortured, but amounts to this single principle: we don’t want to hear criticism from anybody, and if you want our data set to criticize our study, we’re not going to share it with you.

    Not a good foundation for scholarly discourse.

    Liked by 1 person

  4. I tried to make a complaint against my local NHS trust and GP, for misdiagnosis and wrongful detention and forced medication, in a mental health unit.

    On not being able to find a local legal representative, I tried to take it up with NHS England head office. I must have spent about 45min on the phone to various departments, eventually explaining at length to make a complaint official. They said they would send the complaint to me for approval.

    When the complaint for arrived for me to sign, it said that I was complaining that I was having trouble accessing psychiatric help locally!

    I don’t think any NHS department has ever correctly represented me even when spelled out in words of one syllable. And when you can’t even make an official complaint without having to make an official complaint about the complaints department, what can you do?

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  5. I guess if you carry on, you get stuck in an endless loop. The expectation is that you will give up sooner or later. You could really get the impression that the complaints procedures exist in order to exist, not to be actually used.

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  6. Great work.. 🙂

    As you all read what we say or do….lol.

    IF you have proof Prof.W
    Why arent we beaten about the head with it?
    And say; here it is..now go back to your Mums and cry about it.
    But you are talking about details..as a toddler..
    Oh look what they do/say on the http://www..it‘s so bad.
    How cares what we say..IF you have proof..Why don’t you go for it Prof.W?

    Hugs from The Netherlands 🙂

    Liked by 1 person

  7. This is will be one of the most disturbing outcomes in the eighteen years I’ve had this illness if this data is refused , it basically makes them untouchable. We have a right to know this data in its anonymised form. I have no doubt science will catch up with them, but they are free to say and do as they want. At least that will be the message that is sent out. I wonder if they will ever be made accountable, it seems they can influence anybody at will.
    Who’s to say they haven’t placed trolls on the Internet to influence their case ? Using the Internet as a reference point for decisions of this nature opens a huge can of worms that can’t be put back.

    Liked by 1 person

  8. We just need to hope for a sensible decision from the tribunal. It will indeed be dispiriting if it fails to confirm that the data should be released. However, the pressure on the PACE team continues to grow. There’s a good article from former BMJ editor Richard Smith: http://f1000research.com/articles/5-781/v1
    “Patient confidentiality is the reason that authors of a controversial trial on treatment of chronic fatigue syndrome give for not sharing their data, but inevitably they look as if they are hiding something.”

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    1. Thanks for reminding me of the Smith piece. I’ve followed back links to his previous BMJ pieces, and some of the links in those. There has been quite a long history of calls from senior scientists and investigative journalists, as to the urgent need of a regulatory body to investigate research fraud. There is even a ‘secret dossier’ of concerns, in the hands of government, but nobody is doing anything about it. This really is massive–PACE is a drop in the ocean. Do check the original Smith BMJ piece, and this Times Higher:

      https://www.timeshighereducation.com/news/secret-dossier-research-fraud-suggests-government-concern-over-science

      We *must* push for a research regulation authority. Incidentally, check the responses to the BMJ pieces too. There is yet another one from Hooper, and you can check the responses even if the original is paywalled.

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