Trial By Error: No Ethical Review of Crawley School Absence Study

[Skycloud]

If I was meeting EC with an Attendance Officer there I would be too frightened to refuse to join her research which is coercion pure and simple.

This. You explain the situation in the UK re: school attendance very well . It's quite draconian.

 

[lilpink]

We need to change our audience.

I think we're underestimating the power of Twitter especially when the main players of a topic are tagged. BMJ Open have questions to answer...ask them to answer them. That isn't a vexatious response, it's a perfectly sensible route to go. People outside the ME community are often drawn into Twitter conversations and so the pool of actors increases with each Tweet.

 

[lilpink]

should these two threads be merged?

Sensible..I don't know how to do it?

 

[lilpink]

PS: How amazing is it that someone noticed Crawley was using the same REC number multiple times, and that this one was inaapropriate? That is a level of attention to detail that blows my mind. This person deserves some sort of crown.

Indeed! It'll have to be a golden goblet as the emoticon store is all out of crowns.

 

[lilpink]

I wasn't able to comment on the site, I have real difficulty with the technology so if anyone thinks it would be useful, feel free to make this point there.

I don't think DT or many ME patients get the point about an Attendance officer being present. It made my stomach turn over. Parents in the UK are often threatened with court and prison if their children don't attend school, it is used as a threat to the kids as well.
My grandson has severe anxiety and was unable to cope with secondary school. His form teacher and deputy headmistress were very good with him, though we know know it was futile as the anxiety was masking quite bad autism.
But their efforts were totally undermined by the Attendance Officer and Headmaster who wanted to make a contract with penalties for breaking it, as if he did not WANT to go but simply couldn't. Prison for mum was mentioned which did nothing for his stress levels.

A friend's granddaughter was not so lucky. I think her absences were caused by her mother's sever depression - she was scared to leave her alone, but court cases were used as threats and being sent to a residential special school felt like prison for her as well as the torment of her concern for her mother. These people have really power over the children and mess them up.

If I was meeting EC with an Attendance Officer there I would be too frightened to refuse to join her research which is coercion pure and simple.

(As an aside, my grandson was suicidal because he felt so guilty, being reassured that it was not his fault solved that problem, thank god. Being told by creepy crawly that your ME is all your own fault makes me weep for those children. How evil can you be.)

Mithriel

How dreadful for you, and I think your concerns properly illustrate the issues which should have been raised and weren't.

 

[lilpink]

Do we have access to a copy of the letter that was sent? Do we know if the parents and children were advised, in the letter or later, that they were participating in a clinical study?

It would seem if this information ever existed it was never presented to BMJ Open to scrutinize.... that's what the detail of the article infers. That's one of the questions Tuller requires answers to. Btw: do note the irony that the peer reviewer in this case was Matthew Hotopf.

 

[lilpink]

David Marks, the editor of the Journal of Health Psychology which did a lovely ME/CFS special issue recently, has also commented:

I can concur that the source is impeccable.

 

[lilpink]

I saw that Zoe Mullens from the Lancet is on the COPE board. Surely there should be some people who are truly independent who will look at things like this.

The BMJ Open must have broken all sorts of COPE guidelines/rules in this case. Code of Conduct | Committee on Publication Ethics: COPE

 

[lilpink]

Clark Ellis makes a very useful comment under the Tuller Blog at Virology Blog. This is part of it:


"It seems to me that a REC could not possibly have authorised this research had they been asked to (which they weren't). Perhaps that is why they were not asked. How could they have authorised it without breaching data protection laws? The only possible way they could have done so would be to have created a prior mandatory step where ALL parents of pupils were asked if a research team could have permission to look at their child's attendance record in the first place, to identify a subset of people to then invite for interviews. INSTEAD at the point where parents were contacted a data protection breach appears to have already occurred. I mean, this is the child's personal data, right. It's about the child's health.

It seems to me that had an ethical review panel been asked, they could never have authorised the research to be conducted in this way because children's personal data protection rights were not met. That seems a serious matter to me."

 

[lilpink]

https://twitter.com/i/web/status/902332477414359043

 

[lilpink]

https://twitter.com/i/web/status/902332477414359043

 

[AndyPR]

Sensible..I don't know how to do it?

Merging threads can only be done by admins of the forum with, obviously, the powers to do so. To request a merge of two threads, use the report button which appears on every post. I would suggest in regard to a merge of two threads using the report button on the original post in one of the threads is probably best. Then in the box that appears give details of your request - to help the admins please give the link to the other thread you would like merged.

The threads have been merged.

 

[lilpink]

Merging threads can only be done by admins of the forum with, obviously, the powers to do so. To request a merge of two threads, use the report button which appears on every post. I would suggest in regard to a merge of two threads using the report button on the original post in one of the threads is probably best. Then in the box that appears give details of your request - to help the admins please give the link to the other thread you would like merged.

Thanks I'll try to get my brain around that and do it later!

 

[user9876]

I don't think DT or many ME patients get the point about an Attendance officer being present. It made my stomach turn over. Parents in the UK are often threatened with court and prison if their children don't attend school, it is used as a threat to the kids as well.
My grandson has severe anxiety and was unable to cope with secondary school. His form teacher and deputy headmistress were very good with him, though we know know it was futile as the anxiety was masking quite bad autism.
But their efforts were totally undermined by the Attendance Officer and Headmaster who wanted to make a contract with penalties for breaking it, as if he did not WANT to go but simply couldn't. Prison for mum was mentioned which did nothing for his stress levels.

Schools are often the cause of child protection cases against families of children with ME.

We had issues with a school prior to my child being diagnosed. The headmaster was basically a bully but we pushed back. Unfortunately the school governors and LEA backed the headmaster although later I heard from a local pediatrician that they had concerns about children at the school due to his actions. We ended up doing home schooling for a short time prior to high school. I know at least one other child was taken out of the school due to his actions. So yes it is a very threatening environment.

 

[user9876]

I think we're underestimating the power of Twitter especially when the main players of a topic are tagged. BMJ Open have questions to answer...ask them to answer them. That isn't a vexatious response, it's a perfectly sensible route to go. People outside the ME community are often drawn into Twitter conversations and so the pool of actors increases with each Tweet.

Its not just the BMJ who need to answer questions its Bristol University who are responsible for a trial without ethical approval.

 

[user9876]

Clark Ellis makes a very useful comment under the Tuller Blog at Virology Blog. This is part of it:


"It seems to me that a REC could not possibly have authorised this research had they been asked to (which they weren't). Perhaps that is why they were not asked. How could they have authorised it without breaching data protection laws? The only possible way they could have done so would be to have created a prior mandatory step where ALL parents of pupils were asked if a research team could have permission to look at their child's attendance record in the first place, to identify a subset of people to then invite for interviews. INSTEAD at the point where parents were contacted a data protection breach appears to have already occurred. I mean, this is the child's personal data, right. It's about the child's health.

It seems to me that had an ethical review panel been asked, they could never have authorised the research to be conducted in this way because children's personal data protection rights were not met. That seems a serious matter to me."

The point about data protection is a good one. Personal data can only be used for the purposes that it is collected for. So unless it was collected for medical research then its use for this is not acceptable. I can see they would argue that attendance data would be used to improve attendance via this project. I don't think schools understand and respect the data protection act though.

 

[Daisymay]

EC has such an over-developed sense of entitlement. She seems to believe that all the rules and regulations only apply to lesser mortals than herself, and in her case would only hinder her great works - as I'm sure she perceives her endeavours. She would be doing herself and everyone else a big favour if she took up a new career, as an inter-stellar astronaut or something.

LOL! Perhaps we could crowd fund for a Starship Titanic, crewed by all the BPS brigade and send then off into the gamma quadrant to boldly go where no scientific fraudsters have gone before.

 

[lilpink]

Ironic that the peer reviewer in this case was Matthew Hotopf. Never thought we'd be thanking him!

 

[snowathlete]

The point about data protection is a good one. Personal data can only be used for the purposes that it is collected for. So unless it was collected for medical research then its use for this is not acceptable. I can see they would argue that attendance data would be used to improve attendance via this project. I don't think schools understand and respect the data protection act though.

As this personal data is about sickness absence, this data might also be considered to be classed as part of the pupil's medical record, which presumably have additional protections.

 

[Countrygirl]

This comment caught my eye...................a view highlighted by @Mithriel above..............

We need to put ourselves back into the absentee child's position, and imagine what they must feel when they are 'invited' to a meeting with the 'Attendance Officer', and a paediatrician psychologist [It has been pointed out that the psychology is a research preference rather than an academic qualification.]. Remember that 'Attendance Officer' is PC-jargon for 'Truant Catcher': Every child who has seen Chitty Chitty Bang Bang, will fear this particular bogeyman as much as they did the evil 'Child Catcher' in that film.

Now look at the scene that Crawley set up, when trawling for new child research subjects: The Truant Catcher and psychologist, have the power to enforce school attendance and to launch prosecutions of parents who do not ensure that their child goes to school. At worst, a child might be removed from the care of its parents and put out to be fostered with strangers. Thus these children and parents are actually being 'made an offer they cannot refuse'. Under these circumstances, many children are going to be terrified out of their minds!

As she is a psychologist, we ought to expect that Crawley is aware of this power game she set up to entrap more research subjects. Even if this was unintended, she has set up a 'Good Cop'/'Bad Cop' dynamic, under which her interviews were conducted. It seems fairly certain that many children and parents would sign themselves up for anything, with every child's bogeyman waiting in the corner to net any child who does not have a 'sick pass' to explain their truant behaviour!

Whether intentional or not: this method of obtaining research subjects to 'prove a hypothesis of undetected levels of CFS among children' is effectively a case of entrapment with menaces.

If we go on to consider that the clinics will be commissioned to 'treat' all these 'newly discovered cases of CFS', then we really do need to look into the commissioning of these clinics, and any 'headage rates' they are paid per child put through their magical brainwashing system. It appears that there may be a perverse incentive to trawl for as many subjects as possible, and with Crawley being judge and jury in her own court, to brand children with her own 'CFS/CBT-ready' mark, for the sake of gains, both financial and in scholarly acclaim.

This looks to be a whole lot more dodgy than merely forgetting to obtain technical approval for 'data gathering'. If I had been one of the children 'invited' to a meeting at school under these circumstances, I think I would have run away from home. (I wonder if they checked to see if any children did run off rather than accept one of these sinister 'invitations'.).