cis autodrag posted:

I started writing this and it's like a couple pages long already and I need to sleep now, so it may take me a couple days to have something postable. I'm composing it in onenote if that gives you an idea of how seriously im approaching it.

cis autodrag posted:

Worse than that, not all strains of leftism are compatible with queer identities. There's plenty of tankies and strict Marxists out there who see being gay or trans as a silly diversion of the unoccupied bourgeoisie mind.

cis autodrag posted:

I mean, I'm a commie, but more of the star trek utopian kind rather than the maoist third worldist kind.

atomicthumbs posted:

cis autodrag posted:

okay, as promised here is the worlds longest post about gender and health care. i've posted most of this in varying forms in various threads, but since i posted this thread i owe some effort posting so here it is in post/essay form.

before i can begin to even talk about gender in a healthcare software context, we need to go over a lot of conceptual ground first. strap in kids.

---
part 1: terminology and how it lies to you

the first thing you need to understand is that as a cisgender or heterosexual person, the entire way you conceptualize sex and gender is a patchwork of mental shorthand and stereotypes bundled into a convenient set of categories to help you navigate interactions with other people. let's talk about some of them.

sex: this word all by itself has to be thrown away almost immediately in any serious discussion of gender issues. it's an extremely overloaded word, being used to mean everything from "assigned gender" to "what chromosomes" to "what genitals" to "how you think of yourself" and while many of these concepts overlap, they're not the same. most people will realize the shortcomings of this term almost immediately and the response is predictable; people will attempt to define some more specific concept of sex to get closer to whatever they're trying to address. the one cis people most often fall to in my experience is "biological sex". this is actually even more useless so let's talk about it next.

biological sex: i can't count the number of times i've been in a meeting with cis people talking about how to program around sex in some scenario and someone immediately asks the totally profound question "what if we used biological sex?" My response is always "define biological sex."

see, here's the thing. people have started to accept the idea of gender as a spectrum, and that you can be male, female, in between, or none of the above in terms of identity. but their thinking about bodies is still completely locked up in "boy or girl?". people think they're being helpful when they say "well, maybe in this medication alert we should use biological sex" because in their reasoning even if you're not a girl now, you were born as one so that's the most relevant detail. the problem is that the entire concept of "girl" is a generalization. the terminology is lying to you. what does it mean to be a female in the sense of sex. here's a non-comprehensive list of things that, on average, a female has:

• breast tissue
  
• vagina
  
• proportionately more body fat on the thighs and buttocks.
  
• proportionately more white fat
  
• lower blood pressure
  
• higher estrogen
  
• lower testosterone
  
• periods
  
• ovaries
  
• narrow shoulders
  
• wider pelvises
  
• a million more things
  

your first problem is that no female has all of these things. your second problem is that most of them are only meaningful when compared to your list of what a male has. the definitions are mutually dependent. "women have wider hips." wider than what? "than a man." which man? even if you take trans people completely out of the equation (which I am doing at this stage in this post) it means you can't take the fact of femaleness in isolation to guide your decision making. you might warn a woman who carries more fat in her upper back and belly to watch her diet at a lower weight than a woman who carries it in her thighs (weight on the torsos tends to be yellow fat, which is more strongly correlated with poor health than the white fat carried on the lower body). how did you decide to make that warning for one vs the other? they're both women, so you based it on a measure that is totally objective and isolatable: type of fat.

the fat example is simple and vacuous, and i'll tackle some harder ones when we circle back to gender and healthcare technology, but this should at least get you on the right path of thinking about this class of problems.

here's the other problem with the concept of "biological sex": it inherently has to make the assumption that biological sex can change, but it doesn't offer any useful metric for deciding at what point that change happens. i was in a design meeting with a bunch of urologists and they asked that we base the genital diagrams they chart on on biological sex. they were all very confused when i pointed out that they are likely at some point in their life to treat a patient who has a both a vagina and a prostate (they leave the prostate when they do penile inversion vaginoplasty as it's important for sexual sensation and trying to remove it can lead to incontinence). none of them could tell me what biological sex they would consider that person to have. in my home state of wisconsin, they've legally defined biological sex as simply "penis or vagina" and you have to submit proof you've switched from one to the other to change your birth certificate. this is good enough if your goal is just to make trans people's lives lovely, but it's completely worthless to you if you're trying to make medically important decisions.

here's the other other problem: there's thousands of intersex conditions. some of them are totally benign and you'll develop just like a cis man or woman and never feel "wrong" in the role assigned to that and you'll live your whole life without ever knowing. but if we did a dna test on you you might have 3 (or even 4!) chromosomes. others, like total androgen insensitivity syndrome, means that even though you're XY genetically your body doesn't respond to testosterone (even in the womb) so you develop a vagina and look exactly like a cis woman but you have little testicles inside your body instead of ovaries so you're sterile. in the UK there was a controversy because the NHS's policy for over 50 years was to lie to these people and tell them they were XX cis females that are sterile, and to maintain that lie for their entire lives to the point where their GPs have to lie to them about their infertility and falsify records shared with them and so on. this finally came out in the last decade or so and suddenly a lot of women have answers as to why they have inexplicable infertility with diagnoses that don't perfectly match their symptoms. still other varieties have ambiguous genitalia and it's all too common for doctors to simply pick a gender for the kid and operate on them to make them look "normal", or for them to make this decision with the parents. poo poo's hosed up, and all because we really really want people to fit into our easy system of "male" or "female".

ok, let's move on.

gender: i am for the most part going to use "gender" as shorthand for "gender identity" but here i'm going to talk specifically about the wider concept of gender. generally speaking, gender is the scale with the poles "male" and "female" and we stick you somewhere between those two and that's your gender. people have an internal experience of gender (gender identity), other people's expectations of their gender (gender role), how they perform their gender (gender presentation), and so on. gender is another shortcut; gender is a descriptor for all these various social and psychological experiences that we have placed into two poles for simplicity's sake.

in our oh-so-woke society we now have people who hear "gender is a spectrum", never take that train of thought further, and declare that because they're a tomboy they're actually a transmasc because everyone's desperate to be a minority now as long as they don't have to live with any of the downsides (but this is something for me to rant about another time).

the idea of whether gender is totally innate, totally learned, or a mix of the two is a huge raging can of worms debate (unless you're a second wave feminist and then it's innate and came with the vagina you were born with god drat it), and it's led some people to suggest that we just throw away the whole concept. i disagree there. even if gender isn't useful for categorization or critical decision making, identifying with and performing gender clearly enriches peoples' lives. i don’t want to be generic meat unit 77 who likes to wear dresses. digressing again.


part 2: ok, so gender is hard. what about medicine?

alright, so now that we've muddied the waters a bit let's talk about transgender healthcare. you can split trans healthcare into roughly two categories: medical intervention and social intervention. medical intervention includes things like HRT and surgery. social intervention involves therapy, support groups, job assistance, shelter programs, etc.

social care is important, but largely irrelevant to this discussion. social care, at least in the US system, comes largely either through self initiative by the patient or from the PCP/therapist. since patients are, generally speaking, out to the person prescribing them hormones or giving them therapy there's really nothing interesting to lead into the tech part of this post later, so moving on.

medical intervention is the meat of the question that was asked so that's where i'll focus. i'm going to split this into a couple subsections so we can build knowledge and then talk about what areas technology can potentially help (but is really hard to implement).

i'm going to stop talking about intersex stuff at this point because i'm not an expert on it and i don't want to give the impression of speaking with authority on a topic i only know due to intersectional advocacy.

=== 2a: types of intervention

HRT: trans people often refer to any drugs or hormones taken to facilitate transition as "HRT", but this is a dangerous simplification if you need to communicate your medical situation to a doctor. there's a bunch of different drugs you can take, and since it's next to impossible to construct an ethical double-blind study of transition drugs (because you're either withholding necessary medicine from a group with an insane suicide rate or asking cis people to grow cross gender bodyparts for science) all of these drugs are prescribed off-label and it was basically discovered by accident that any of these do poo poo. here's some of them (i'm talking about trans women in this section because for men Testosterone is basically all they need and the advantages and disadvantages of taking shitloads of steroids are pretty well known):

estrogen (generally in the form of estradiol). this is probably the one everyone assumes when you say HRT for a trans woman. in fact i've had multiple non-trans doctors ask me "how long i've been on estrogen" and be surprised when i gave them a longer list of drugs. back in the day they got it out of pregnant mare piss and pumped you full of dozens of milligrams and unsurprisingly lots of trans women used to drop dead of kidney and liver issues because estrogen is hard to process. nowadays we use other drugs to suppress your body's testosterone production so the estrogen works better in smaller amounts (more on those drugs later). a typical dose these days is 4-6mg daily administered sublingually.

risks include blood clots and liver/kidney issues. don't fuckin smoke if you're taking estrogen and make sure you stop taking it a couple weeks out from major surgeries. DVTs ain't nothing to gently caress with.

spironolactone - this is the one and only drug permitted to be prescribed as a testosterone blocker in the US. its on-label use is for heart disease and when you start this poo poo you get a lecture from your doctor not to stand up too fast because your blood pressure is going to be lower now and you might pass out. it just so happens to also nestle quite nicely into the testosterone receptors in your body, which tricks your balls into making less T. this is the key to using lower doses of estrogen.

drawbacks are that it lowers your blood pressure (which sucks if you were already healthy), it's a diuretic so you have to drink like 4x the water and eat infinity salt to make up for all the sodium your losing (i drink like 20 bottles of water a day, poo poo you not), and makes your kidneys suck at processing potassium so if someone slips you a salt substitute or low sodium soy sauce you'll poo poo your kidneys out and die. i havent eaten a banana in 3 years.

finasteride - this is sold under the trade name Propecia. it's on-label use is for mans to keep their hair from falling out. it's used off-label in a similar manner to spiro because it functions by preventing your body from processing testosterone into DHT. it's almost always prescribed only in conjunction with spiro because it's not as good at lowering your T production. a lot of WPATH members think it doesn't work at all but euro doctors love to prescribe it.

there's a few other t-blockers they prescribe in like thailand and eastern europe and i urge you not to take any of them if i didn't mention them here.

progesterone - commonly administered as medroxyprogesterone, this is a hormone that spikes in pregnant women. some women take it because the crazies over on susan's place thinks it makes your boobs develop nicer but most doctors ive talked to say there's no evidence for that and it doesn't do much. risks included heightened depression, lowered libido. sounds like a great thing to prescribe to people prone to offing themselves.

gender confirmation surgery: any surgery intended to help bring the body in line with the patient's mental self image. insensitive shitheads will call this a "sex change" but if you understood the section on why sex is a stupid word you understand why that's dumb as gently caress. here's some common ones.

breast augmentation/chest reduction - adding tits to trans women, chopping them off of trans men. nuff said.

vaginoplasty - making a vagina out of a penis. there's several methods. in the US it's penile inversion. there's the "thai method" where they use your scrote instead and sometimes hunks of your colon. people who go to thailand for their surgery have an insane religious devotion to the idea of it as the One True Vagina but getting your pussy made in thailand has all the same risks as going to the 3rd world for any other medical procedure with the bonus that american doctors won't touch you if you have an emergency because you're a walking liability now.

there's also variations like the zero-depth labiaplasty where they make a labia without a hole. they prefer this for old people who ain't having sex anyway because it reduces the time under anesthesia and bleed risk.

after you get your vagina you stop taking spiro because your balls make like 98% of the testosterone in your body, and you get to take less estrogen too (and eat bananas).

orchiectomy - this is where they just remove your balls and leave your dick because you like having a dick but you want to stop taking spiro/stop having to jam your balls up inside your body every day to tuck.

hysterectomy - you all know what this is and it shouldn't surprise you that trans men get them. lets them reduce their T dose.

phalloplasty - this is making a penis out of the clitors (which is enlarged by T) and a scrote out of the labia. you get those dope fake balls that dog show cheaters use too. there's a bunch of variations on this just like there are for vaginaplasty but i'm not as familiar with them. one thing to note is that a huge number of trans men opt to skip on this surgery because it has some drawbacks and it's not as far as advanced as lady surgeries.

voice surgery - for trans women; shorten the vocal chords to raise the voice's fundamental pitch.

"cosmetic" procedures - this would be all the poo poo you can do to your face and body to achieve the look of your gender identity. they're not actually cosmetic (imagine the horror of being a woman and looking at your adam's apple in the mirror every day), but historically insurance companies have lumped them in there to avoid paying, though this is changing (thanks obama). think poo poo like fat transfers, facial recontouring and implants, and so on.

other stuff:

voice therapy - helping people develop speech patterns and pitches that help project their gender identity.

movement therapy - help you "walk like a dude" or "walk like a chick"


the idea you need to be getting from this section is that transition is more complicated than just "is on HRT" or "had the surgery" and all these different factors affect medical decisions differently.

== 2b: healthcare scenarios

in this section i'm going to walk through a few different healthcare scenarios to help ground my actual technical recommendations later.

PCP visit (not transition related): i go to the doctor and i have a bad cough. i'm not out to my PCP (someone else is managing my hormones). he orders a couple tests and sends me on my way. my doctor doesn’t need to know my trans status.

ER visit: ER workflows are often to get the triage and admit done asap and then chart later when the patient is stable. if i am admitted unconscious or unable to respond, it may be necessary for the admit/triage system to let the physician and nurse know about my status. after all, the condition is not often entered up front so the computer has no way of knowing if they need to cut my clothes off (and be surprised by unexpected genitals) or if i just hit my head.

unfortunately this sort of "eager" notification can have downsides. there are countless stories of trans people being denied care by ER providers once their status is known (here's a listicle: http://www.cosmopolitan.com/health-fitness/a45167/transgender-healthcare/). a particularly horrifying case i heard anecdotally in my community was of a trans woman of color who was denied care for a gunshot when the ER doctor removed her clothes and found a penis. he said "that's not a woman, that's a friend of the family" and refused to treat.

because of that risk, this may be a policy decision on the hospital's part. eager notification may get people killed without proper training on trans issues for providers, but lack of notification may lead to deaths when providers explore avenues of diagnosis that aren't possible or order contraindicated drugs.

flu shot clinic: trans status doesn't need to be known, end of story. i'm going to take this simple case to draw an important distinction: which aspect of trans status is secret depends on where a patient is in their transition. if i am just starting hormones and am only out to a handful of people, my gender identity and new name are the secret. if i'm years along and living full time as my true self, it's my deadname and sex assigned at birth that are a secret.

gynecologist: if you’re a trans man, your gyno probably knows your trans status. on the other hand, your gynecologist's software might "helpfully" stop you from making appointments on line since men don't need to see gynos. avoiding automated microaggressions like this is critical in reducing the stress in your trans patients' lives.

urologist: i'm a trans woman who has had bottom surgery and have an appointment with the urologist for incontinence. there's several issues to attend to here.

disclosure - the urologist needs to know that i have a prostate, as prostate issues can be involved in incontinence. he may also need to familiarize himself with the bottom surgery procedure to understand how your urethra is configured and where you may have scar tissue. the challenge is that walking into a proctologist appointment to find that he already knows you're trans can be a shock. ideally, we should have a way to notify the patient that disclosure may be needed and have them sign off that they're agreeing by taking the appointment. we can't set the doctor up for failure so in this situation "don't disclose" is not an option.

charting - patient has decided to take the appointment despite disclosure. the doctor finds that the prostate is inflamed. in many software systems there are diagrams that doctors chart on, but i've never encountered one that has a vagina+prostate diagram. this leaves doctors in the sticky situation of either picking the male diagram and charting on the prostate or picking the female one and leaving some rather lengthy notes somewhere vaguely on the urethtra.


part 3: engineering recommendations

Okay, here's that meaty poo poo you are looking for. after 5 years as a trans person in the health care software industry, here's my thoughts on how to design a system that accommodates trans (and hopefully intersex) people to a reasonable degree.

i'm guided by the following principles:

• Granularity of data. At some point, we're going to be sharing info that the patient really doesn't like sharing. we should try to minimize the amount of data we have to share if at all possible.
  
• respect for privacy (duh)
  
• minimization of risk
  

=== 3a: data model

Anatomical inventory: this is critical functionality for a medical record. individual elements for each organ and major system should be present. default to the typical set of organs for someone's sex assigned at birth, and allow the doctor to add or remove organs as necessary or note differences in the organs. this is critical not just for tracking what transitioning patients change in their body, but is honestly necessary for providing correct care for anybody who has any organ removed or changed. after all, cis women have hysterectomies too, and cis men have testicles removed. or kidneys. or colons. and so on.

genetic inventory: at a minimum, the ability to track which chromosomes a patient has (especially if they have more than 2). ideally you should be able to store full sequencing data but this is obviously is an insane amount of data and should probably only be stored for patients who are already known to have a genetic condition that's worth alerting on.

hormone history: a clinician should be able to easily retrieve my most recent hormone levels, as well as historical trends and averages. this can be critical for both diagnosis and for avoiding dangerous orders.

surgical history: not everything can be accounted for by anatomical inventory. breast implants, trach shaves, muscle implants, and so on, can affect treatment but are not technically anatomy.

patient-disclosed providers: patients should be able to select specific providers and specialties to which they would like to disclose by default.

required disclosures: an organization-maintained list that defines which providers definitely need disclosure to do their jobs and how this should be communicated to patients.

sex assigned at birth: this is the sex the doctor said the baby was. there's some stuff we just haven't studied enough to know why the gently caress sex makes a difference so you're still stuck using this (creatinine clearance is one such test).

gender identity: duh

legal name: what is the insurance company going to demand on the claim

legal sex: see legal name

preferred name: this should be distinct from nickname. epic uses the same field for both and it leads to pure hell in trying to decide whether it's safe to show a user the preferred name, as it could be "tom" short for "thomas" or "tina" for legal name "mike".

private data: this is basically an on-off switch that says whether nondisclosed users should see legal name and sex or preferred name and gender identity.

there's probably a lot of other poo poo i'm forgetting but this list gives you an idea of how to approach things.

=== 2b: functionality

here's some examples of the sort of functionality a system needs to have to be successful. this is nonexhaustive and should give you an idea how to extrapolate to areas of your system not addressed.

best practice alerting: EMRs frequently pop up warning when a provider does something contraindicated. a patient may go in for a condition that does not require disclosure, but at some point the doctor enters an order that is inappropriate based on the data we know about the patient. we should pop up an alert to the provider, tailored as narrowly as possible. for example, if the doctor orders a pregnancy test the alert may simply say "unnecessary test: uterus not present in anatomical inventory". if the doctor orders a referral to gynecology we may need to give a more specific alert or tell them to talk to the patient first (and which we do should probably be org defined).

pharmacy: clinical pharmacists are probably the clinicians i have the most respect for in the whole system. these guys probably save more lives than anybody else just from stopping stupid physician orders. this is one of the only providers who i think should always be disclosed. after all he is rarely going to actually meet the patient but he could stop a bad interaction before it starts. give them alerts when we can programmaticaly detect contradindication too.

ER: configure whether to disclose at admit time or not based on hospital policy and whether the patient was admitted conscious and responsive.

primary care: track whether PCP is also managing patient's hormones and transition care. if not, just show them whatever the non-private data is. patients have to maintain an ongoing relationship with their PCP and should feel in control of their disclosure (unless an order goes in that could cause a problem, obviously).

billing: store on the patient coverage what sex and name should be sent to the insurance company, as this can vary by carrier. smaller HMOs are often leaning toward accepting claims with "social information" rather than legal name and sex as long as it's still uniquely identifying. use this when generating claims. if claims need editing, maintain a separate queue where only trained and authorized users can review claims with potentially outing information on them.

patient engagement: don't automatically generate letters to transwomen telling them it's pap smear time. we're all really sick of getting these. stop reminding trans men about prostate exams. in general, provide faculties to generate directed communication on finder grained data than just sex. send mammogram reminders to anyone with breasts documented in the anatomical inventory. only send pap smears to those who were born with vaginas, etc.

claims: if your system processes claims (i actually worked on epics software for administering managed care health plans, lol i was evil) provide the ability to intelligently base claims for sex-discriminated services on either sex assigned at birth, gender identity, or both. definitely don't use legal sex at all. what does what alabama says my sex is have to do with my health? ditto authorizing referrals, etc.

rooming: drive who you room patients with off of gender identity and prefer single rooms when possible. except in alabama where it's illegal to room based on gender identity (im not joking about that btw, you will get your patient sent to jail).

case management: route new cases to case managers who are trained to deal with trans patients. transgender patients have a list of comorbidities a mile long.

radiology: prompt for disclosure for stuff like pelvic xrays. the last thing you want is the patient finding out that the tech can see their dick after the damage is already done.

diagrams: make diagrams modular. don't build a diagram of the whole reproductive system. instead have diagrams of the distinct organs and be able to smartly stitch them together based on the patient's anatomical inventory. same for any other sex-separated organ system. your doctors will thank you when they have less confusing notes.

the end

hopefully all that gave you some idea of the issues involved, the sensitive areas, pitfalls, and what you can do to get it right. thanks for reading.