My requesting the PACE trial data is much simpler than it is being portrayed. The PACE investigators promised the data would be available upon request as a condition for publishing in PLOS One. No one forced Peter White and colleagues to publish in an open access journal committed to data sharing, but by doing so they incurred an obligation. So, they should simply turn over the data.
Of course, providing me with the data would involve the risk of my analyses exposing what they have been hiding or falsely claiming.
The PACE investigators have thus far refused to turn over the data. They have treated my request as falling under a Freedom of Information request, which it does not. But with my request conceptualized in this way, they denied it because they deemed my motives in seeking the data “vexatious,” a strategy that they have used with other requests.
The PACE investigators are playing hardball.
Peter White previously enlisted Stephan Lewandowsky to disseminate a misrepresentation of the PACE investigators’ commitment to transparency:
Some requests were complied with, so long as they did not compromise medical confidentiality, future publications, or academic safe space to deliberate…Our deliberate policy, to help allay concerns about the trial, was to be as transparent as possible regarding what we did, while also protecting medical confidentiality and our staff and patient [p 17].
We know of course this isn’t true. The collusion of Lewandowsky in this caper undercuts his claim that he and Dorothy Bishop are not ‘intimately familiar with the details’ of the PACE Trial. (See comments on their Nature article, Research integrity: Don’t let transparency damage science) Lewandowsky’s claim was made in reaction to the two of them being criticized for lumping those who seek the PACE data, like me, with science deniers who must be resisted:
Orchestrated and well-funded harassment campaigns against researchers working in climate change and tobacco control are well documented. Some hard-line opponents to other research, such as that on nuclear fallout, vaccination, chronic fatigue syndrome or genetically modified organisms, although less resourced, have employed identical strategies.
Is there a remarkable coincidence in Lewandowsky and Bishop attempting to make data sharing so complicated, just when the PACE investigators are urgently seeking reasons not to share their data? Here is some evidence that it is not a coincidence.
Dorothy Bishop is an adviser to the Science Media Centre founded by Simon Wessely. The SMC is coordinating a letter writing campaign to Parliament instigated by Peter White attempting to get an exclusion from the Freedom of Information Act for request for data.
What was revealed by a response to a request made under the Freedom of Information Act
A FOIA request produced an email from Fiona Fox of the Science Media Centre dated October 30, 2013:
Those of you, like the SMC, a worried about the malicious use of FOIA against researchers may like to see this and use it in your own efforts. I’ve just been briefed about [redacted] FOIing a number of universities about the primate research [redacted] is a convicted animal rights extremists!!! Surely this was never the intent of FOI!!!
The email is attached to a further thread of emails. The source for the October 28, 2013 email is redacted but the CC to Fiona Fox is revealed along with the subject letter:
As you can read, QMUL are lobbying MPs to get a good FOIA exemption passed into law that properly defends research. Please use this as a basis for asking your own Universities and other likely lobbyists to get in touch with their own or your own friendly MPs.
I think when you read the letter template, you can see that there is no doubt that the source is Queen Mary University of London’s Peter White.
The template letter that is attached for sending to Parliament attempts specifically to get an exemption for the PACE trial:
The Intellectual Property bill currently going through Parliament includes a proposed exemption for current research from disclosure under the Freedom of Information Act requests and would prevent the premature release of data in academic research.
We very much welcome this necessary exemption as we believe that it will do much to avoid the significant risks to academic freedom presented under the current pre-publication exemption of the Act. We also believe that it will help ensure the ability and willingness of researchers to engage in free inquiry into important areas of research.
We are writing to you because we are concerned that the bill as it stands may not fully clarify when the exemption from requests applies. In many cases, a research project proceeds via a series of publications, rather than one alone, progressively investigating and reporting outcomes. This, for example, is the case with the P/VCE Trial, an important study into the safety and efficacy of various treatments for Chronic Fatigue Syndrome in which QMUL researchers have participated for the last 10 years. Here there have been separate papers, published according to a defined research and publication strategy, that have addressed, or will address in sequence the main results of the effectiveness and safety of the treatments, their cost-effectiveness, long-term follow-up and the mediators of the treatments to explain how they work. [Emphasis added]
It is not immediately clear from the bill as it stands whether information from such a continuing series of publications within a given research project would fall within the exemption beyond the first publication, since it may be argued that a “report of the research” has already been published under the present wording of proposed Section 20.
We would therefore suggest the following slight change to clarify “the programme” and “publication… of a report”:
“the programme is continuing with a view to the publication, by a public authority or any other person, of a report of the research that either includes the requested data or the analysed results thereof.” [Emphasis in the original]
We hope that you will raise this issue in Parliament so that the bill may be ensured to have its intended and necessary effect.
With best regards
My previous blog post, Glimpses into the assault on data sharing discussed how the UK Independent Commission on Freedom of Information issued a call for evidence. Peter White, submitted testimony to the UK Independent Commission on Freedom of Information some time between October 9 and December 7, 2015:
“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.”
Another blog post, King’s College London stalls some more, reiterating refusal to release the PACE trial data discusses a press release dated December 18, 2015 in which Kings College, London reiterated its refusal to release the PACE trial data.
King’s College, London had not communicated with me directly, but I learned of the press release from a tweet by Simon Wessely. I recommend following Simon on Twitter @WesselyS to get the latest updates on the maneuvering by the PACE investigators to resist sharing their data.
The press release indicated:
We are…concerned for the rights and welfare of trial participants. Participants did not give consent to the public release of their data when they entered the trial. In particular we are concerned to ensure that there is no risk of misuse of the data such as through inadvertent personal identification. The scientists who have already received data have all signed a formal confidentiality agreement, approved by the independent PACE Trial Steering Committee, which required that they respect the confidential nature of the data, and keep them secure, as agreed with trial participants when they consented to take part. We stand by our decisions to decline two recent applications for trial data as we believe that they did not meet these requirements.
We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.”
The Nature comment by Stephan Lewandowsky and Dorothy Bishop expands on these concerns. Of course, that’s only a coincidence.
In future blog posts, I will be discussing more about the Science Media Centre’s well-orchestrated campaign to protect the claims of the PACE investigators’ interpretation of their data, including by attacking the motives and character of those who criticize it and request the data for independent reanalysis.
The motive is simple. If the claims of the PACE investigators are as credible, then disabled people who are getting payments from the government can be required to get cognitive behaviour therapy as a condition for continuing their payments. Of course, it has been gradually unfolding that CBT or Graded Exercise Therapy (GET) can not get chronic fatigue/myalgic encephamyelitis patients back to work. And a course of GET makes many of them more disabled. But who cares when requirement that these patients be in such treatment can be used to deny social welfare payments to them?
A future blog post will also reveal the government and corporate funding sources for the Science Media Centre, including energy company BP, Proctor & Gamble, Rolls-Royce and pharmaceutical company Astra Zeneca. Another blog post will discuss the origins of the smearing of critics of the PACE trial as science deniers. I’ll explain why we are being lumped with animal rights activists and climate change deniers, but not opponents of fracking.
I’m sure that many readers were as confused as I was by Dorothy Bishop’s apparent about-face from a November blog, Who’s afraid of Open Data to the recent Nature commentary with Stephan Lewandowsky. In November Bishop was saying
“Fears about misuse of data can be well-justified when researchers are working on controversial areas where they are subject to concerted attacks by groups with vested interests or ideological objections to their work. There are some instructive examples here and here. Nevertheless, my view is that such threats are best dealt with by making the data totally open. If this is done, any attempt to cherrypick or distort the results will be evident to any reputable scientist who scrutinises the data. This can take time and energy, but ultimately an unscientific attempt to discredit a scientist by alternative analysis will rebound on those who make it. In that regard, science really is self-correcting. If the data are available, then different analyses may give different results, but a consensus of the competent should emerge in the long run, leaving the valid conclusions stronger than before.”
I think this seeming contradiction could be resolved if Dorothy Bishop publicly clarified her relationship to the Science Media Centre, including where she stands, as an adviser, on its campaign against data sharing.