Trial By Error: Seeking More Details on Crawley School Absence Study

By David Tuller, DrPH

This morning I sent the following freedom of information request to Bristol University. My friend and colleague Steven Lubet, a professor at Northwestern Pritzker School of Law, joined me in making this request. Professor Lubet is an expert on legal ethics, among many other fields, and in July he guest-blogged here about the purported “ethics” lecture given at Oxford by Professor Michael Sharpe.

Our freedom of information request to Bristol involves Professor Esther Crawley’s 2011 school absence study, which I blogged about on Monday. In this study, schools identified students with unexplained absences and invited them and their families to meet with Professor Crawley to discuss the matter. The study authors did not seek ethical review for this study on the grounds that it only involved “service evaluation,” even though it was piloting a new method of identifying previously undiagnosed patients for Professor Crawley’s CFS/ME clinical service.

Under the circumstances, we were interested in reviewing the letters sent to the families, as well as any other information they were provided about the study. We did not send the request directly to Professor Crawley but to the Bristol University legal representative who handled my complaint about Professor Crawley’s false libel accusation earlier this year. We also sent it to the university’s freedom of information office.

Here’s what Professor Lubet and I wrote:

In 2011, Professor Esther Crawley and two colleagues, all from Bristol University, published a study in BMJ Open titled “Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics.”
 
As part of the study, three different schools sent letters to the families of children with patterns of chronic absence. Here is how this process was described in the BMJ Open paper: “Families…were sent a letter from the school that invited them to meet with a paediatrician from the Bath specialist CFS/ME team (EMC) and a member of school staff to discuss why their child was missing school.” EMC is Professor Crawley.
 
Under the UK’s Freedom of Information law, we are requesting a copy of the letter sent to these families—or copies of the letters, if the different schools used different versions.  Of course, the copy or copies of the letter or letters shared under this FOI request should be fully anonymized. Given the provenance of the study, we presume that Bristol holds copies of the letters in its files. 

We are also requesting copies of the information about the 2011 school absence study that was provided to the families and students contacted through these letters. This information might have included printed or online leaflets, for example, or other material.

Finally, we are requesting a copy of the consent form or forms these families and students might have been asked to sign as participants in the 2011 school absence study. Of course, any such forms should be fully anonymized.
 
Thank you for your quick attention to this matter.

Comments on this entry are closed.

  • Valentijn

    Keep up the great work 🙂 They’ll delay responding as long as possible, and probably reject the request initially, but that’ll just make them look even worse.

  • Lady Shambles

    Great stuff. Awaiting their reply with very considerable interest.

  • Wendy Boutilier

    Made my day. I wonder if they even had letters to copy? Good move David – the ball is in their court.

  • Paul_Watton

    My thoughts exactly. Bristol’s ethical failures will eventually catch up with them, but what penalty will they actually have to pay?

  • Sheila Campbell

    Excellent, I hope you get a quick reply but I’m not betting on it.

  • Barry

    I suspect any response to the consent forms issue, if there is any response, will be a somewhat circular argument along the lines of consent not being required because it was not run as a research study … or maybe they won’t be quite so stupid as to give that answer. I’d be very surprised if consent was sought in any proper manner, if at all. I would guess the overtone of the meetings was intended to imply parental consent not featuring strongly in the process.

  • clark ellis

    Thank you David and Steven for asking for this important information. Should be pretty straightforward for them to provide this data I’d have thought. If they try to resist that might be quite telling in itself.

  • Matthew G Webb

    Yes brilliant David please keep it up. Maybe one day these people will realise that we’re not just a bunch of sick people that can be manipulated and used as career making fodder. Lets keep making them accountable until its easier for them to do proper science and research.

  • Joan Byrne

    Great move David and thank you to Steve Lubet also for his support and expertise. I sincerely hope that you are giving a certain bunch of cretins many sleepless nights….

  • Janine Bailey

    Great work. Of course some will see it as vexatious FOI requests………

  • deboruth

    Dave, I am horrified that the school attendance officers would disclose and hand over the identity of minors to a research scientist for experimentation as has happened. Perhaps this subject would be of interest to members of the local (Bristol area) chapter of the National Union of Journalists (NUJ.) One wonders what if any “encouragement” was offered to children and parents to respond to the researchers entreaty and thereby participate in this experiment. Local journalists would be best placed to find out. Enquiring minds wish to know.

  • Tina Rodwell

    It constantly astounds me what they are capable of hiding and allowed to shrink away from.

    It would seem our countries powers to be, do not believe in protecting our people? They are happy to include children in research without parents knowing or understanding the illness, or possible harms? Happy to let data that could show research is unworthy of a trial, to go unpublished, knowing that unpublished data is being held up as the basis of further unethical research. This is costing our country dear and taking funds from other desperately needed research.

    It appears not to matter how many laws are passed and broken, or procedures are put in place for health and safety reasons; they can be and are liberally flouted with no accountability? It would appear they are just give lip service fooling the public into a false sense of security. The public then turn on the parents of chronically ill children, stating that our country would never allow this behaviour to happen? I get this quoted at me all the time.

    I have just read this article and it would seem that none of Bristol Universality trials data are being released? I thought it would be of interest to you? https://thebristolcable.org/2017/07/medical-research-in-bristol-violates-international-transparency-guidelines/

    I would like to say a big thank you to you and all the influential people; that are now starting to see the truth and are brave enough to stand up for, and with us.

  • Marina

    Truly splendid David please keep it up. Possibly one day these individuals will understand that we’re not only a cluster of wiped out individuals that can be controlled and utilized as profession making grub. Lets continue making them responsible until its simpler for them to do appropriate science and research.
    http://www.ourtownhealth.com/wisconsin-department-of-health-services-gets-input-on-drug-testing-for-food-stamp-applicants

  • mesupport

    Penalty if any breach of ethics procedures in a document with KCL contribution http://www.leedsbeckett.ac.uk/~/media/files/student-hub/research-ethics/research_ethics_procedures.pdf

  • 1SarahL1

    Could Bristol University be playing a larger role than previously thought in withholding data to obscure or evade publishing fraudulent/ corrupted research results? Considering the harm that Crawley’s SMILE trial with children must surely have caused, this would be a likely scenario, imo. BU seems to be attracting a lot of negative attention and rightly so, it would seem: https://thebristolcable.org/2017/07/medical-research-in-bristol-violates-international-transparency-guidelines/

  • Brenda Vreeswijk

    Excellent!! Wondering when they will respond and if they will come up with an excuse not to comply.

  • Jane M.

    Excellent, thank you!

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