Trial By Error: Who Has the School Study Documents?

Andy

Andy

Senior Member (Voting rights)
I first wrote about BMJ Open’s 2011 school absence study in August, 2017. The investigators, all from Bristol University, exempted the study from ethical review on the grounds that it qualified as “service evaluation.” The study included a hypothesis, generalizable conclusions and in-person interviews with participants. Since these are all features of “research” that requires ethical review, the study did not qualify as “service evaluation” under known definitions. It should not have been conducted or published without ethical review.

Two days after I posted that first of many blogs about the study, Northwestern University law professor Steven Lubet and I sent a freedom of information request to Bristol for some documents related to the research—specifically, the letters sent by schools to families, and information leaflets and consent forms provided to participants. We were concerned that the school letters could possibly have been coercive, especially given the apparent involvement of school attendance officials in the study’s outreach effort. Also, since this research was conducted without ethical review, we wanted to know what, if anything, the participants were told about the study and what, if anything, they consented to.
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http://www.virology.ws/2019/03/04/trial-by-error-who-has-the-school-study-documents/
 
There does not seem to be any indication of which schools/Local Education Authority were involved other than they are likely to have been in the catchment area for the Bath CFS Service, one of the schools was an all girls state school and a Larry Cunningham was involved in liaising with the schools.

If as claimed neither Bristol University and the Bath service have the relevant paper work, in what format was Proff Crawley's instructions to the schools about what to include in the letters to parents/guardians, and would a freedom of information request to the schools/LEA be feasible.

[There is an all girls state school in Bath itself, though it is an academy which will impact on any role the LEA might have played and has a mixed sixth form.]
 
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Bristol wrote back that it did not have such documents, noting the following: “This study reports on a pilot clinical service set up with the school attendance service in Bath to try and improve school attendance.
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So that's the way to do it, just claim any research project is a 'pilot clinical service'.
 
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inox said:
So that's the way to do it, just claim any research project is a 'pilot clinical service'.
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I'd like them to describe the service being delivered.

Surely service evaluation has to actually name the service being delivered. What is that service? And how does it relate to the actual evaluation?

Of course it doesn't help that it was published under research. Sometimes the devil is in the details. Sometimes the devil doesn't bother with that and just slaps the contradictory label himself because he knows nobody holds him accountable or care about those "non-patients" with imaginary complaints.
 
The quickest way to find out who has these documents would be to ask Crawley herself who has them. It would be fascinating to have her reply that she doesn't know.

Of course the request cant come from David Tuller as that would be "harassment". :rolleyes:
 
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Peter Trewhitt said:
There does not seem to be any indication of which schools/Local Education Authority were involved other than they are likely to have been in the catchment area for the Bath CFS Service, one of the schools was an all girls state school and a Larry Cunningham was involved in liaising with the schools.

If as claimed neither Bristol University and the Bath service have the relevant paper work, in what format was Proff Crawley's instructions to the schools about what to include in the letters to parents/guardians, and would a freedom of information request to the schools/LEA be feasible.

[There is an all girls state school in Bath itself, though it is an academy which will impact on any role the LEA might have played and has a mixed sixth form.]
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In my professional experience, all children with chronic health problems and 'fatigue" would have to go first to a pediatrician, ( sometimes the 'school doctor'/ community paediatician before any other statutory services ( including specialist ME and CFS Clinics) would accept the referral.
Likewise for Alternative Education, Pupil Referral Units have the community paediatricians coming into the unit and also into mainstream schools.

The LEA will more often not accept requests for home tuition unless the community paediatrician is willing to endorse it.

Likewise Educational Welfare staff and school new shiny 'attendance" officers. Or "newly named 'Local Offer Brokers"!!!!!

School,nurses if they still exist, will bow to the community paediatric service.......

So people like EC are all powerful and will have a defined captive audience.

New on the scene since 2010 are Parent Carer Organsations tasked with doing the LEA bidding on Alternative Provision for children with complex needs
https://www.bristolparentcarers.org.uk/
often, sick kids are treated as an afterthought, or what Bristol Commissioning team call ' Pushed out " learners!!!!,......

https://www.bristol.gov.uk/documents/20182/239212/Commissioning+Plan+-+Meeting+the+needs+of+‘pushed+out’+learners+-+March+2016/d3a625a5-c0a6-4039-b95f-7e5a8d2b693b


https://www.bristol.gov.uk/schools-learning-early-years/alternative-learning-provision.

Alternative Learning Provision

The Alternative Learning Provision (formerly the Pupil Referral Service) is for pupils who can’t attend mainstream educational settings.

The service is made up of:

  1. Lansdown Park Secondary Specialist Provision

  2. St Matthias Park Pupil Referral Unit

  3. Bristol Hospital Education Service
The Educated Otherwise/Alternative Learning Provision Hub commissions alternative provision from a range of alternative providers.

Alternative Learning Provision

The Alternative Learning Provision (formerly the Pupil Referral Service) is for pupils who can’t attend mainstream educational settings.

The service is made up of:

  1. Lansdown Park Secondary Specialist Provision

  2. St Matthias Park Pupil Referral Unit

  3. Bristol Hospital Education Service
The Educated Otherwise/Alternative Learning Provision Hub commissions alternative provision from a range of alternative providers.
 
What I find astonishing here, is that nobody seems to be accountable for holding archived records of this information? It's not like it's receipts from when they nipped out to buy lunch; it's critical documentation from a clinical study! Are there really no regulations or guidelines to regulate retention of such data? If they are effectively admitting such data has been lost, then what the heck is going on? It's ludicrous. Is it maybe in breach of some regulation? I hope so.
 
Barry said:
What I find astonishing here, is that nobody seems to be accountable for holding archived records of this information? It's not like it's receipts from when they nipped out to buy lunch; it's critical documentation from a clinical study! Are there really no regulations or guidelines to regulate retention of such data? If they are effectively admitting such data has been lost, then what the heck is going on? It's ludicrous. Is it maybe in breach of some regulation? I hope so.
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No, silly - it's just a pilot for a new service :noteworthy: no need to keep records :rolleyes:


(.....the tongue in cheek is obvious, I hope? :p ) also - :banghead: :mad:
 
The first thing I would try is to send an email to both FOI departments, copying the responses you have received and saying something like:

To both parties,

As you can see (below) I have made requests to both authorities and each has said the other is responsible.

I wonder if you could please assist me by saying which in fact was the responsible authority for the trial and which would then be the one who would hold the information.

Thank you for your help.

Yours sincerely,


Incidentally I would never use the term 'vexatious' in a request. If I think there is a likelihood that the vexatiousness exemption may be claimed then I would give the reasons for the request, but without actually using the word.
 
dave30th said:
Of course that's one of the ridiculous things here. This was a pilot effort. So how could it have been service evaluation? There was no existing "service" to be evaluated.
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I wonder if it is worth writing to the local education authorities in the area (who used to run the schools most will now be independent) for example

Bath and North east Somerset
https://www.bathnes.gov.uk/services/schools-colleges-and-learning
https://www.bathnes.gov.uk/services...cracy/data-protection-and-freedom-information
information_governance@bathnes.gov.uk

South Gloucester Which is part of bristol
http://www.southglos.gov.uk/education-and-learning/schools-and-education/
FoI Information: http://www.southglos.gov.uk/council...tion/making-a-freedom-of-information-request/
freedomofinformation@southglos.gov.uk

Bristol
https://www.bristol.gov.uk/schools-learning-early-years
FoI information
https://www.bristol.gov.uk/data-protection-foi/freedom-of-information-foi
https://www.bristol.gov.uk/foi-request
 
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