Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

Did I understand it correctly?

School data was collected and evaluated.

Why was it allowed to collect school data in the first place? You would need the consent from the school attendee or a parent. So you would need to ask a certain amount of people from a school if they agree that their school data is collected. Did this happen?
[Although Germany and UK are different, is data safety so different, too? In Germany it would be illegal to collect (and process!) data without informed consent and the right to withdraw this consent.]

Edit: And why should a parent with a child who has missing times consent to such a thing?
 
Luther Blissett said:
Because the parent was being asked by the same people who have the ability to take them to court and have them fined, or worse. The fear -for the parents- would be that not agreeing would be seen as not being reasonable.
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I don't get it. What of the following happened?

Point of time 0: Crawley has her "research" idea. She wants to collect school data.

Point of time 1: Crawley collects data and evaluates it. She finds a certain percentage of students with a certain amount of missing time and contacts the parents. (No anonymity!)
Question: Is she (or anybody else) allowed to contact the school and ask for data of their students/pupils without consent of these persons? In Germany, this would be illegal.

Point of time 2: Crawley "invites" parents to her clinic. Since parents are scared, they agree to come. No free choice.

OR

Point of time 1: Crawley contacts several students/pupils/parents and asks for their consent to collect their school data.
Question: Why should a student/parent consent? At this time, it's a free choice.

Point of time 2: Students/parents give their consent and are probably invited by Crawley etc.
 
Point of time 0: Crawley has her "research" idea. She wants to collect school data.

Point of time 1: Crawley asks the schools if she can study their absent pupils.

Point of time 2: The schools 'invite' the parents and children to attend a meeting, with Crawley and a school official attending the meeting. The data is collected.
 
This seems an appropriate point at which to introduce something I started on an other thread.

The ethical and legal frameworks are reasonably clear for a normal doctor/patient relationship when the patient is referred to a consultant by his GP.

In situations where a doctor is effectively acting on behalf of the state, without express or implied consent of the patient, a legal regulatory and supervisory oversight is available.

What is the situation in cases such as this, which is betwixt and between the two. The normal mediation of the GP seems to be missing. There is no statutory framework to protect the child.

Are there clear ethical guidelines for the conduct of the consultant in such cases, and if so have they been complied with. Or is it envisaged that such interactions should not, and would not, take place without specific ad hoc oversight by an ethics committee?
 
Luther Blissett said:
Point of time 0: Crawley has her "research" idea. She wants to collect school data.

Point of time 1: Crawley asks the schools if she can study their absent pupils.

Point of time 2: The schools 'invite' the parents and children to attend a meeting, with Crawley and a school official attending the meeting. The data is collected.
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I see.

Is that legal in the UK? The school provided sensitive data to a stranger (it's not important that the school didn't directly provide the data; it did so indirectly: By inviting strangers and pre-selected persons (pre-defined selection criterium: missing time) it is easy to link the persons with the variable "missing days"). AND this leads to identification. Both is not only problematic, but also illegal (at least in Germany). This should be checked.

If this is legal in the UK - wow. :(
 
Inara said:
Why was it allowed to collect school data in the first place? You would need the consent from the school attendee or a parent. So you would need to ask a certain amount of people from a school if they agree that their school data is collected. Did this happen?
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I think Crawley perhaps was incapable of distinguishing her 2 roles here. I think she had a role as a community paediatrician - similar perhaps to that described on page 49 here - https://www.rcpch.ac.uk/system/file...gress_Main Curriculum Report 2018 (FINAL).pdf (or go to https://www.rcpch.ac.uk/progress and open RCPCH Progress Curriculum), ie holding clinics in various community settings including schools. As part of this she may potentially have been allowed access to school attendance records, who knows. She also had a different role as a NHS clinician and researcher, holding CFS/ME clinics in a hospital setting. Even if she legitimately had access to the school information and held it in her clever head, she surely did not have the right to transfer it from one role to another. Quite clearly in research ethical terms the 2 roles must be viewed as completely separate. If she’d had a part-time role as a receptionist maybe she’d have thought it ok to take the details of callers to use or contact for some research project; if she’d had a role on a hospital board similarly maybe she’d have thought it ok to use that information to swing some research funding.

When you're saving the world, does it matter whether you are or aren't wearing your super-woman costume at the time?
 
Lilpink said:
I think Crawley perhaps was incapable of distinguishing her 2 roles here.
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As a doctor she is simply not allowed to leak any patient data - or use it, no matter for what. If she is a "school doctor" she isn't allowed to do so, too.

The same holds for the school itself.

I am quite shocked.

In the end, this really might be a legal case, if the pledge of secrecy was violated.
 
Inara said:
I see.

Is that legal in the UK? The school provided sensitive data to a stranger (it's not important that the school didn't directly provide the data; it did so indirectly: By inviting strangers and pre-selected persons (pre-defined selection criterium: missing time) it is easy to link the persons with the variable "missing days"). AND this leads to identification. Both is not only problematic, but also illegal (at least in Germany). This should be checked.

If this is legal in the UK - wow. :(
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Personal information is normally collected for a purpose and consent is asked for it to be used for a given purpose. Also consent would need to be given to share information outside of the organization.

The question is what terms for data sharing did parents agree to when the children were signed up to the school.

But if the school or school nurse reviewed records and they then asked consent from parents to set up the meetings it may be legal but only if doing that was covered by the declared purpose.

It does seem to raise questions around the data protection act and whether the school acted properly as the data controller. But maybe that is why ethics permission was not asked for.

Germany has a reputation for having very strong privacy laws. I think the UK data protection act is basically derived from the EU laws.
 
Lilpink said:
I have just watched it. For info it's on the last disc of the 2011 Conference as part of the plenary session. I would say when she mentioned PACE she was collectively heckled ..but more in a 'flabbergasted unison' of people simultaneously remarking 'what on earth are you going on about..don't you know ..yada yada yada'. That isn't verbatim of anyone as there wasn't a distinguishable commentary on the DVD. It wasn't anything more than one might see on Question Time imo.
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Does she say anything much?

Adrian said:
When people talk about the "quiet majority" they usually mean that they believe other people agree with them and are just not speaking out. But normally with no evidence of that beyond the strength of their own beliefs. It always seems like an unreasonable argument to me.
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From the Tribunal's ruling on the PACE data:

"Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were "engineering the coverage" to “frame the narrative" in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient 'community'. This has been highlighted by respected scientists, and clinicians (see p8790/B7). Rather, no evidence of a 'silent majority' in support of the PACE trial has been put forward."

http://www.informationtribunal.gov....iversity of London EA-2015-0269 (12-8-16).PDF
 
At change.org there is a petition after a child was forced to miss school celebrations as his attendance record did not reach the minimum standard. He has asthma and was sent home from school, but the 'rules' were enforced vigorously and he was punished for having an illness.

https://www.change.org/p/justine-gr...al-conditions-for-their-attendance/u/22199801



Here's an interesting comment from a parent on the petition about an attendance meeting.

My son is gluten intolerant and was often off for weeks whilst we were trying to get a diagnosis. We provided a copy of all the Gp and paediatrician notes. My son's school ordered me (along with other parents, such as, parents of a girl with a broken hip!) to face a panel of staff from the school and some from the council. They were running late, then forgot about me and were then ill prepared with paperwork (so much for their timekeeping and coming prepared for the lesson). I listed all the evidence that I value education, including being a Parent Governor at a different school, my own degree and successfully home schooling my eldest son through 8 GCSEs (by myself). The school staff became very embarrassed and the Council staff kept casting meaningful glances at them. In the end they apologised. But it was like being on trial.
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This seems to be a self confident and assertive parent, and look at how they felt. 'It was like being on trial'.
 
Adrian said:
The question is what terms for data sharing did parents agree to when the children were signed up to the school.
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You can only consent if you know what you consent to. Any other consent - forced upon, non-informed, deceptive - is invalid.

Even if a school asks from a parent the consent for sharing data to third parties (which I can't imagine is allowed), it would have had to be specified in which manner, what parts of the data, to whom etc. I am sure it wouldn't include the case where data is shared for "research" purposes. Here, data was shared indirectly, but knowledge was easily available, non-anonymously - and parents were under pressure.

If I were one of those 'participants' in Mrs Crawley's 'study', I would go and get information about whether this process was okay and who could be taken responsibility for. Starting a petition, one like @Luther Blissett linked, could be an option if such processes are deemed to be legal.

It reminds me strongly of fascist systems (e.g. Inquisition, DDR, a certain German time of history etc.), where data are collected about citizens, and if by any way you seem to be 'strange', you get problems.

This cannot be accepted. And although I view the EU critically, it still wants the citizens to believe they have basic human rights, so I cannot imagine that EU law allows something like what happened during the school absence study.

I can only hope what happened was an exception, but I fear not.
 
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