Thanks for that link, SpartacusLangClegicus it's a well written and well argued paper. I wonder if Sarah is on Mumsnet?
I'd like to speak to her.
The error she makes in her paper is the assumption that the data that changes on a medical record is the patient's sex data, resulting in most people retaining accurate sex data, and a minority having inaccurate sex data as per their request.
This isn't actually what occurs. In actual fact it's far worse.
What's on your medical record, sex or gender?
We all have a field for sex AND a field for gender identity on our medical records. The data architecture was devised a decade ago precisely to capture BOTH for all the reasons Sarah argued in her paper.
But for reasons unknown, instead of implementing a system whereby we all have the sex field accurately populated, and some people have their identity field populated too, to reference how they would like to be addressed, what has happened is this:
ALL OF US HAVE NIL DATA IN THE SEX FIELD.
The only reference to male or female that can be found on any of our medical records, is in the "CURRENT GENDER" field.
We've all been assigned a gender identity, on our medical records, instead of a sex. And although there is a field for our sex, (it's label is "phenotypic sex" and its description is that it should be observed and not self stated); it is empty. For all of us.
Our sex is not recorded, at all. The only references to whether we are male or female on our medical records is to be found in the "current gender" field, which is described as 'self-stated, not observed'.
This is the field that is used in any and every work of data analysis performed using NHS data.
We're not stratifying medical data by sex.
We're doing it by gender identity.
'gender identities' of the UK population are an unholy mixup of records that have been changed upon request and do not reflect biological sex, records that would be accurate, if they were use to infer biological sex, and probably, clerical errors.
And there is NO WAY to tell which is which.
It's like putting a single poisoned apple in a barrel of apples and shaking them.
There's no way to identify which is poisoned, and which is not.
The entire barrel is now no good.