Sex, Gender & the NHS part 2
Part 2: Your Medical Record and your Ladybrain
“Sex” refers to the biological and physiological characteristics that define men and women.
“Gender” refers to the socially constructed roles, behaviours, activities, and attributes that a given society considers appropriate for men and women.
To put it another way:
“Male” and “female” are sex categories, while “masculine” and “feminine” are gender categories. ~World Health Organisation
And here I’ll let you know what I’ve discovered about our own NHS Patient Medical Records, and whether they hold sex or gender, or both.
Q: How does the NHS make the distinction between sex and gender on our medical records?
A: They’re supposed to record BOTH.
The NHS is legally obligated to respect a person’s ‘gender identity’, should they declare one. Why? A person’s inner feminine or masculine feelings has no bearing on their medical treatment. It’s because with the advent of the GRA 2004 and the Equality Act of 2010, the law enshrined the concept of gender identity, then gender reassignment, alongside the biological reality of sex. If a hospital is at risk of a lawsuit for failing to acknowledge a person’s protected characteristic of gender reassignment, (which may be solely the declaration of feelings, nothing more) it will capture extra ‘gender’ data to sit alongside the sex data, for those circumstances where a patient feels they have both a sex, and a gender. But the ‘gender’ data should be incremental, added only for those patients who want it. It certainly isn’t and should never be a replacement for bodily sex, not where medical records are concerned. Obviously.
Woe betide a medical system that takes gender affirmation so far as to completely ignore and overwrite sex. Biological sex is immutable, and medical treatment of the sexes differs by necessity between males and females. Male and female anatomy, genetics, reproductive organs, diseases, blood test reference ranges, response to drugs are different.
There is evidence that male blood transfusion recipients face higher mortality rates if their blood donor is female and has ever been pregnant. Transplant donor/recipient sex matters. Sex matters. To overwrite a patient’s biological sex in a medical record with a gender identity would be dangerous, even life threatening.
If the NHS ignores gender, well yes, it may hurt a person’s feelings, and it may get sued. But if it ignores sex, people might actually die.
Following the legal recognition of gender mandated by the Gender Recognition Act the NHS made plans to keep a record of both.
So how does the NHS capture ‘gender’ when it still must keep a record of sex?
The NHS Sex and Gender Standards
After the GRA 2004 was made law, an NHS exercise was commenced, to standardise patient information and data within the various IT systems across the NHS. Within this exercise a suite of documentation was created, dedicated to designing a system architecture that could attempt to cope with the challenges specific to using BOTH sex AND gender as data.
One of the main documents was called the Common User Interface — Sex and Current Gender Input and Display.
The consequences of an NHS mix up between sex and gender were recognised as dire.
“The term ‘Gender’ is now considered too ambiguous to be desirable or safe”
The NHS designed its systems infrastructure to purposefully capture BOTH Sex and ‘Current Gender’.
There’s also a neat little hint about the relative importance of sex vs gender in this document too. The input controls for gender suggest “The design also has a default of ‘Not Known’ to encourage users to select an option only when appropriate.” Because gender ISN’T always appropriate. We don’t all subscribe to pink brain/blue brain ideology. The default of Gender: ‘Not Known’ can happily remain that way indefinitely.
Whereas the controls for sex say this: “Patient Safety Assessments have revealed that this data is too important to leave in a default value, which could be misinterpreted as actual input”. In other words, sex is always important — so complete it. The default here is ‘Null’ — which forces the user, (the person creating or amending the patient record) to proactively select a sex choice. Sex is mandatory on the record.
Here’s the field in the data architecture in which sex data is captured and stored. It’s called PERSON PHENOTYPIC SEX:
There’s more than one field to capture ‘gender’, I suppose because gender can change as often as a person can change their mind:
So, different fields, different concepts, different descriptions, different data.
And the documentation prescribing the architecture of the systems is liberally peppered with warnings about the consequences of conflating the two. Sex and Gender are NOT the same thing, and confusion has serious consequences.
So, to be clear. DO NOT MIX UP GENDER AND SEX. Got it.
Here are some of the warnings. Potential Consequences of not adhering to the standards.
And here are some more risks of getting it wrong, from the “Clinical Safety Case” documentation:
This particular risk above is revelatory. In addition to once again confirming the importance of understanding the difference between sex and gender it tells us that 1. There is a risk to a record being easily altered in error, 2. There is a risk to not notating SEX; gender is an administrative (and now legally compelled) courtesy but SEX is essential for clinical care, 3. there are supposed to be ‘rollovers’ on the labels — these are pop-up descriptions on forms that appear when you hover over a label to make absolutely sure you know what the accurate description is, and 4. National Screening programmes are SUPPOSED TO BE BASED ON SEX, NOT GENDER VALUES.
All of which gives crystal clear direction that the NHS understands that gender should never overwrite sex. People can and will get hurt if they do.
Q: So, how’s this exemplary system of recording gender separately from sex working in NHS practice?
A: Disastrously
At this point I want to mention that I initially started researching this subject in an attempt to prove that any attempt to overwrite sex with gender is not just ill-advised, but actually dangerous when applied in a medical setting. And everything I discovered revealed that, yes, the NHS understood this perfectly, and had designed systems and safety guidance to accommodate the identities of the few without jeopardising the health of us all. Phew, right? Our medical system accepts the immutability of our sex, and it isn’t about to endanger us by pretending otherwise. After all, the NHS sex and gender design guidance in 2009 was uncompromising and left little room for error.
Having ascertained what the sex fields and gender fields are in our medical records, and having read the NHS documents determining how the data should be entered and used, I was confident that my own personal medical record would reflect the safety guidance. And perhaps look something like the linked examples above:
e.g. Sex = Female, Gender = unknown.
I submitted my Subject Access Request to my local hospital to look at my own medical record data.
And what I found was this.
My personal medical record sex field is BLANK. Unpopulated.
In a disturbing turn of events, the hospital that cared for me in pregnancy and childbirth, twice, doesn’t know what physical sex I am.
It is sure, however, that I have a ladybrain, though. Because there it is on my medical record. I have definitely never discussed my inner femininity with any doctor that I recall. I don’t remember asking that my adherence to stereotypes, or ladybrain mentality be captured on my medical record. Nevertheless, here it is, my female ‘gender identity’ that I didn’t know I had:
So, in a not fun twist to the tale ending, and despite everything the NHS has put in place to prevent this exact situation from happening, this is how things have ended up anyway.
I’ve been allocated an identity, a ‘gender’ — one that I haven’t actually agreed with I may add — and my sex has vanished.
Is your medical record like mine? Sex erased, gender identity assigned instead?
The only way to find out is to submit your own subject access request as I did. But my prediction is that you’ll find something similar on your own record. You may well have been allocated a ladybrain or a manbrain on your medical record, and your biological sex may be missing.
Given the explicit directions and warnings of possible catastrophes by the architects of the NHS data system, it is astounding to learn those clear directions have gone unheeded.
“The term ‘Gender’ is now considered too ambiguous to be desirable or safe”
I think the NHS should probably urgently consider that whilst their sex and gender design guidance was exemplary, their execution of it has failed, horribly, and that failure is now exposing patients to actual, physical risk.
The NHS have monumentally screwed up here. There are very real risks to having patient medical records that do not capture sex, but which instead log only purported masculine or feminine feelings, changeable at will, or at the careless keystroke of an administrative assistant or busy healthcare professional. And a field which can be altered and edited easily is a field which exposes a patient to risk. Should sex be easily editable? No, it should be cast-iron locked down, and it should be the field used for every significant clinical application. And it should be sex, not gender that is the measure used to analyse patient outcomes for diseases, treatments. And it should be sex, not gender, that is the characteristic used to segregate wards for privacy.
Should sex ever be unpopulated? Categorically, NO.
Gender, for those — and ONLY for those — that wish to have their feelings noted on their medical records, should remain the preserve of polite honorifics and pronouns in correspondence. Administrative communication purposes. Not medical treatment, not national screening programmes, not data analysis of medical outcomes and treatment.
How on earth have the NHS failed so badly to follow their own safety guidelines here?
There are already consequences to this NHS Failure
The predictions of hazardous scenarios identified in the risk logs of 2009 are now happening in 2018. This one for example:
Is evidenced right here in the NHS document “NHS population screening: information for transgender people” which states EXACTLY the real life impact that the systems were supposed to be designed to prevent. “If you are a trans man aged 25 to 64 who is registered with a GP as male, you won’t be invited for cervical screening”.
We’re now screening health conditions by gender identity, instead of sex.
In the USA in 2017, a 5'1'’ transman (biologically female, male gender identity) lost crucial time getting placed on the kidney transplant waiting list, because they were assessed using the male reference ranges for kidney function, instead of the female ones. Additionally, it is known that in kidney transplants, the chance that donated kidneys will be rejected is almost a tenth higher if the organ is taken from a man and transplanted into a woman than with any other combination of the sexes. Scientists believe the increased risk of failure could be the effect of a specific male chromosome which produces a reaction which can cause the kidney to be rejected by a woman’s immune system. Transplanting a male kidney into a female is 8% more likely to fail within the first year and 6% more likely between two and ten years after surgery.
Needless to say, reference ranges and donor/recipient risks are based upon biological sex, not psychological identity, yet this avoidable situation is obviously a likelihood in the UK if all our medical records are not compliant with the safety guidance, keeping sex on record permanently.
The system was designed to prevent this. Screening is supposed to be based on sex, and sex is supposed to be captured alongside gender. But it isn’t happening.
People may die as a result of the NHS failing to correctly capture sex on medical records and mistakenly using gender in its place. And any person subject to an administrative error where their ‘gender’ has been inadvertently changed, will also be at risk.
It’s difficult to know how to end an article like this. The relief I felt upon discovering the infrastructure is in place, and the safety standards are published was immense. The shock at the consequent failure to execute those standards almost a full decade after they were published has left me reeling.
My hope is that those who comprehend the massive implications of this failure will begin to call upon the NHS to start implementing their own rules.
My hope is that those stakeholders in the NHS start reviewing their practices, checking their databases, challenging their datasets, asking questions about sex and gender. The architecture is there. The system has been designed to do this properly. What is needed is leadership to get the job done now.
Set our medical records straight. Record our sex.
For my part, there is not much else I can do. Except this. I’ll be writing to the NHS and asking them to remove any and all ‘gender’ related data that is held on my personal record, using GDPR as my justification. They can and should add my phenotypic sex data in the empty sex field, but if they do, I suspect that data will sit, unused and dusty, whilst for all purposes the systems futilely try to extract information from the gender fields instead.
The system is broken, and it needs mending, fast.
I don’t have a ladybrain, I have a female body, and I’ll keep going until my medical record reflects that.