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.”