Transgender data collection in the electronic health record: Current concepts and issues

Abstract

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.

Full text

Research and Applications
Transgender data collection in the electronic health
record: Current concepts and issues
Clair A. Kronk
1
, Avery R. Everhart
2,3
, Florence Ashley
3,4
, Hale M. Thompson
5
,
Theodore E. Schall
6
, Teddy G. Goetz
7
, Laurel Hiatt
8
, Zackary Derrick
9
, Roz Queen
10
,
A Ram
11
, E. Mae Guthman
3,12
, Olivia M. Danforth
13
, Elle Lett
3,14
, Emery Potter
15
,
Sim
on(e) D. Sun
3,16,17
, Zack Marshall
18
, and Ryan Karnoski
3,19
1
Center for Medical Informatics, Yale University School of Medicine, New Haven, Connecticut, USA,
2
Population, Health, and
Place Program, Spatial Sciences Institute, University of Southern California, Los Angeles, California, USA,
3
Center for Applied
Transgender Studies, Chicago, Illinois, USA,
4
Faculty of Law and Joint Centre for Bioethics, University of Toronto, Toronto, On-
tario, Canada,
5
Department of Psychiatry and Behavioral Science, Rush University Medical Center, Chicago, Illinois, USA,
6
Ber-
man Institute of Bioethics, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins
University, Baltimore, Maryland, USA,
7
Department of Psychiatry, University of Pennsylvania, Philadelphia, Pennsylvania, USA,
8
University of Utah School of Medicine, Salt Lake City, Utah, USA,
9
School of Public Health and Social Policy, University of Victo-
ria, Victoria, British Columbia, Canada,
10
Health Information Science, School of Human and Social Development, University of Vic-
toria, Victoria, British Columbia, Canada,
11
Program in Computational Biology and Bioinformatics, Yale University, New Haven,
Connecticut, USA,
12
Princeton Neuroscience Institute, Princeton University, Princeton, New Jersey, USA,
13
Department of Family
Medicine, Samaritan Health Services Geary St. Clinic, Albany, Oregon, USA
14
Department of Biostatistics, Epidemiology, and In-
formatics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA,
15
Lawrence S. Bloomberg
Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada,
16
Center for Neural Science, New York University, New York,
New York, USA,
17
Department of Neuroscience and Physiology, Neuroscience Institute, NYU Grossman Medical Center, New
York, New York, USA,
18
School of Social Work, McGill University, Montreal, Quebec, Canada, and
19
School of Social Welfare, Uni-
versity of California, Berkeley, Berkeley, California, USA
Corresponding Author: Clair A. Kronk, PhD, Center for Medical Informatics, Yale University School of Medicine, New Ha-
ven, CT 06510, USA; clair.kronk@yale.edu
Received 22 February 2021; Revised 13 May 2021; Editorial Decision 17 June 2021; Accepted 18 June 2021
ABSTRACT
There are over 1 million transgender people living in the United States, and 33% report negative experiences
with a healthcare provider, many of which are connected to data representation in electronic health records
(EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in
EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize
both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We
also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the dis-
claimer that these questions are more complex than commonly assumed. We conclude that collaborations be-
tween local transgender and gender-diverse persons and medical providers as well as open inclusion of trans-
gender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm
in transgender and gender-diverse health.
Key words: gender and sexual minorities, transgender persons, electronic health records, bioethics
V
CThe Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association.
All rights reserved. For permissions, please email: journals.permissions@oup.com
1
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doi: 10.1093/jamia/ocab136
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Research and Applications
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INTRODUCTION
Thirty-three percent of transgender persons have had negative expe-
riences with healthcare providers and 23% describe avoiding needed
medical care due to fear of mistreatment.
1
Reasons for avoiding care
include experiences of misgendering, pathologization, and medicali-
zation.
1–4
These forms of discrimination have been codified in elec-
tronic health records (EHRs), as well as in diagnostic and billing
codes and criteria including the DSM, Systematized Nomenclature
of Medicine Clinical Terms (SNOMED-CT), and International Clas-
sification of Diseases (ICD), becoming the de facto language of
treatment. It is especially concerning that terms like “sodomy,”
“surgically transgendered transsexual,” and “transvestic fetishism”
persist in some terminologies. These terms, formed from alleyways
of systemic discrimination,
5
continue to perpetuate anti-LGBTQ vi-
olence, despite protest against their usage from affected groups.
6–10
As feminist scholar Sara Ahmed noted in a 2018 talk: “When those
who try to stop a culture from being reproduced are stopped, a cul-
ture is being reproduced,”
11
thereby continuing an already ever-
present cycle of transphobic rhetoric in medical standards and termi-
nologies.
3,12–16
For the past 3 centuries,
22
medical professionals have diagnosed
being transgender as schizophrenia,
23–26
paraphilia,
27,28
multiple
personality disorder,
29,30
borderline personality disorder,
31,32
nar-
cissistic personality disorder,
33
obsessive-compulsive disorder,
34
or
autism,
40,41
if analyzed in terms of contemporary understandings of
the term transgender (see Definitions and Concepts). However, it is
of note that a number of cultures have gender systems that are not
binary and have varying degrees of gender diversity (as judged by
contemporary Eurocentric/binary standards), in general and includ-
ing rituality some have compared with hormone replacement ther-
apy and gender-affirming surgery; further, some of these cultures
have histories of gender diversity stretching back far further than a
few centuries, up to thousands of years.
17–21
While it is crucial to
avoid pathologization of trans experiences (ie, suggesting that trans-
ness itself is a mental disorder or condition), it is important to ac-
knowledge that a number of neurodiverse people identify as trans
and gender diverse.
35,36
Oftentimes, such neurodiversity is inappro-
priately used as a mechanism to deny access to potentially life-
saving gender-affirming care.
37,38
For an in-depth exploration of the
intersections between neurodiversity and gender diversity, see Ad-
ams and Liang.
39
Even in contemporary literature, pathological terms such as
“gender dysphoria syndrome,”
42
“transsexual syndrome,”
43
“gender identity disorder,”
44
“transsexualism,”
16,45
and
“transgenderism”
16,46,47
still exist. “Transgender” continues to ap-
pear on patients’ problem lists.
48–50
While this is partially due to vo-
cabulary systems like SNOMED CT and ICD, this is also part of a
larger systemic problem concerning how a “problem list” is defined.
Oftentimes, there is nowhere else to indicate that a patient is trans-
gender, forcing even affirming providers to use it. Replacement ter-
minology or another area provided for such indications to not be
labeled as “problems” is vital to preventing pathologization and
medicalization of transness.
Prejudice and discrimination against transgender people in bio-
medical research and medical practice are well established.
1,51–66
The misunderstanding and erasure of gender diversity has led to
poor study design, additional barriers accessing care, unethical dis-
closure of transgender status in medical contexts, and in some cases,
patient death. Three prominent cases of avoidable patient death due
to negligence include that of Lou Sullivan, who died in 1991 after
being denied care at an HIV/AIDS clinic
67
; Tyra Hunter, who died
in 1995 when emergency medical technicians discovered she was
transgender while treating her after a car accident and refused to
save her life
68
; and Alejandra Monocuco, who died from COVID-19
(coronavirus disease 2019) after emergency medical technicians
learned of her HIV status in 2020.
69
Little has changed in terms of
either medical discrimination against transgender patients, or data
collection and usage with transgender patients in the period span-
ning their deaths.
22,70,71
To move past barriers to proper health care
for transgender people, both fields must undergo paradigm shifts.
Sexual orientation and gender identity (SOGI) EHR data collec-
tion policies are currently implemented without adequate knowl-
edge of the needs of transgender populations, without provider
education, and often only in limited care contexts (such as psychiat-
ric, endocrinological, and gender identity clinics).
72,73
Additionally,
many policies have been rolled back as the result of political pres-
sures,
70,71,74
despite a call to action for supporting transgender sci-
entists during the epidemic.
75
In one case involving the COVID-19
National Institutes of Health Researchers Survey SOGI questions, 2
of this piece’s authors were told via personal communication that a
2-step question, like the one proposed later in this perspective, con-
cerning assigned sex at birth was omitted due to concern “about the
number of demographic questions,” despite its validated effi-
cacy.
74,75
As a result, transgender populations are, and will not be,
adequately described in biomedical contexts.
Ethical data collection for transgender and gender-diverse com-
munities in health care is needed now more than ever. Medical pro-
viders and health informaticians have a duty to address the ongoing
systemic mistreatment of transgender and gender-diverse people
within healthcare institutions.
76,77
Accurate research is crucial to
redressing inequities. To policymakers, what is not documented
might as well have never happened.
DEFINITIONS AND CONCEPTS
Accurate and equitable clinical practice and research requires discus-
sion of operational standards.
78–80
Transgender populations have
often been defined in terms of relationships to diagnostics ,
81–83
pro-
cedures,
44,84
or assigned sex at birth (ASAB) or assigned gender at
birth (AGAB) vs gender identity data (Table 1).
94,95
The differences
in terminology are important to discuss, not only because they have
impact on clinical care,
96
but also because lack of appropriate termi-
nological frameworks in research studies impacts the usability, ap-
plicability, and reproducibility of results.
In this work, we use Ashley’s gender modality framework to dis-
cuss the term transgender as specifically representing an incongru-
ence between one’s AGAB and one’s gender identity.
97
Occasionally, transgender is shortened as trans.
92
We also sparingly
use the term transgender and gender diverse, which is meant to be
inclusive of gender diversity that does not specifically fall under the
gender modality framework .
Within this framework, we would first like to clarify the mean-
ings of 2 terms: sex and gender. In international legal systems, these
terms are often defined as being interchangeable, given that a num-
ber of languages do not have a gender-sex distinction linguisti-
cally.
98–101
This necessitates usage of qualifying terms such as
assigned sex or gender identity.
105
For instance, “gender identity”
may be rendered as “sex identity” in some languages.
102–104
Yet,
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while gender identity is widely understood as the gender one identi-
fies as, assigned sex (at birth) often is not. Owing to confusion indi-
viduals may have over the phrasing, there is often an additional
clause added when asking for ASAB, namely clarifying that what is
meant is the gender marker on an individual’s birth certificate or
other birth record.
106–108
It is at this point that ASAB in theory
becomes AGAB in practice. This is because birth certificates (and by
extension, birth records) are legal documents
109–111
containing a
marker that is a culturally dependent and socially constructed signi-
fier (and therefore correctly called a gender marker).
112,113
A list of
known culturally dependent AGAB values is linked in the additional
supplementary tables in Supplementary Appendix A. Owing to
translation difficulties, it is entirely possible that “assigned gender at
birth” may be rendered as “assigned sex at birth” in some jurisdic-
tions and languages. In terms of clinical practice (and therefore in
medical standards), this will likely not affect care. However, it is im-
portant to realize that these are fundamentally different concepts
and relate different information, which may become an issue in
terms of cultural competency in some regions, that is, “sex” implies
a fundamentally biological component in English (even if this is not
always the case with “assigned sex at birth”), which can insinuate
that a provider believes that a trans woman patient’s “real” sex is
“male.”
PERSPECTIVES ON DATA COLLECTION
From the clinical perspective
When a transgender person enters a clinic, health care is rarely their
sole concern. Will the staff use their name and pronouns? Will their
privacy be respected? Will the clinic provide adequate services or
services at all? These questions burden transgender people as they
navigate the medical system, and they are often answered quickly
through implicit and explicit cues.
Because providers rarely understand their trans patients’ lived re-
alities, their unique needs and questions are seldom prioritized.
Expecting boards comprised mostly or entirely cisgender medical
professionals or EHR vendors to understand what transgender
patients need without close collaboration is impractical, especially
given the dearth of LGBTQ health education in most medical train-
ing (Figure 1).
116,117,126–130
(LGBTQ is the abbreviated form of les-
bian, gay, bisexual, transgender, and queer or questioning. Note
Table 1. Selected definitions of the term “transgender” and its variants, 1965-2021, showcasing how the term continues to evolve and
change over time, oftentimes making results of studies utilizing the term (or similar terms) nonreproducible
85
Year Definition Reference
1965 Where the compulsive urge reaches beyond female vestments, and becomes an urge for gen-
der (“sex”) change, transvestism becomes “transsexualism.” The term is misleading; ac-
tually, “transgender[ism]” is what is meant, because sexuality is not a major factor in
primary transvestism.
86
1978 [Transgenderists] are people who have adopted the exterior manifestations of the opposite
sex on a full-time basis but without any surgical intervention.
87
1988 It used to be that a “transgender[ist]” was a person who could express him or herself com-
fortably in both masculine and feminine terms... Recently, however, the term
“transgender[ist]” has come more and more to mean a person of one sex living entirely
in the gender role generally considered appropriate for the opposite sex (cross-living).
Most people who consider themselves to be transgender[ist]s do not want or need sexual
reassignment surgery, and do not identify with “transvestite.”
88
1998 Originally, transgender referred to the group of people, also know[n] as full-time cross-
dressers or nonsurgical transsexuals, who live and work as the opposite gender continu-
ously and for always. Now it more often refers to the group of all people who are in-
clined to cross the gender line, including both cross-dressers and gender-benders, the
“umbrella definition” that covers everyone.
89
2008 An umbrella term for people whose gender identity and/or gender expression differs from
the sex they were assigned at birth. The term may include but is not limited to transsex-
uals, cross-dressers, and other gender-variant people. Transgender people may identify
as female-to-male (FTM) or male-to-female (MTF). Use the descriptive term (transgen-
der,transsexual,cross-dresser, FTM, or MTF) preferred by the individual. Transgender
people may or may not decide to alter their bodies hormonally and/or surgically.
90
2011 Relating to or being a person whose gender identity does not conform to that typically asso-
ciated with the sex to which they were assigned at birth.
91
2018 Often shortened as “trans.” An umbrella term for people whose gender and/or expression
does not match their birth assignment. Transgender includes many of the terms in this
list and may or may not include transsexuals, cross dressers, drag kings/queens, and
others who defy what society tells them their gender should be. How people identify
with this term depends on the individual and their relationship with their gender.
92
2021 A term describing a person’s gender identity that does not necessarily match their assigned
sex at birth. Transgender people may or may not decide to alter their bodies hormonally
and/or surgically to match their gender identity. This word is also used as an umbrella
term to describe groups of people who transcend conventional expectations of gender
identity or expression—such groups include, but are not limited to, people who identify
as transsexual, genderqueer, gender variant, gender diverse, and androgynous.
93
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that LGBTQIAþ
114
or 2SLGBTQIAþ
115
may be more appropriate
if the curriculum also actively includes Two-Spirit, intersex, and
asexual or aromantic persons, as well as other marginalized or
minoritized sexual- or gender-based groups.) Up to half of transgen-
der people must educate their providers to receive appropriate
care.
1,131
This structural incompetency translates into significant
pitfalls in SOGI data collection.
132–135
SOGI data collection often begins with intake forms. Institu-
tions and providers do not always understand how to ask for one’s
gender identity. Gender identities can include female (woman),
male (man), and nonbinary, among numerous others. In EHR sys-
tems, gender identity answers often include “FTM” (short for
female-to-male), “MTF” (short for male-to-female), “transgender
male,” “transgender female,” and simply “transgender.”
136–139
These options are antiquated and problematic, in part owing to the
massive shift in the conceptualization of what these terms have
meant over the past 8 decades (Table 1). The first 2 (FTM and
MTF) have largely fallen out of use among transgender people and
in transgender-related literature because they fundamentally assume
a “change” in gender—that a transgender person was “female”
and now is “male” (FTM), typically after some sort of medicaliza-
tion process (hormone replacement therapy and/or gender-affirm-
ing surgery).
137,141,149–151
This contradicts how many trans people
understand their identity and can confuse patients. Note that dis-
taste toward “FTM” and “MTF” is not universal; many transgen-
der men have centered much of their North American community
around the usage of FTM (in organizations like the FTM Founda-
tion and FTM International, for instance), whereas the usage of
“MTF” is more heavily tied to the pornography industry and is ac-
tively utilized to discriminate against transgender women.
140–144
Two other terms that have become more popular in the last decade
to describe “directionality” of transness, being “transfeminine”
and “transmasculine.” While these terms are marginally more ef-
fective than terms like “FTM” and “MTF” and often are used to
describe an individual’s gender identity,
145
we would like to em-
phasize that their usage tends to conflate access to medical care
with unspoken gender expression requirements, that is, insisting
that trans women must be feminine or that trans men must be mas-
culine to be considered as having “succeeded” in transition-
ing.
146,147
Further, these terms often binarize nonbinary persons
unnecessarily.
147,148
In medical contexts, using assigned gender at
birth alongside gender identity already achieves most of what terms
like “transfeminine” and “transmasculine” attempt to elucidate.
Therefore, we use terms like “assigned male at birth” or “assigned
female at birth” where necessary in this article. All 5 options (being
“FTM,” “MTF,” “transgender male,” “transgender female,” and
“transgender”) center cisgender people on intake forms, reserving
unqualified “male” and “female” for them while trans people are
segregated into the separate, qualified categories of “MTF,”
“FTM,” “transgender male,” “transgender female,” and
“transgender.” Fundamentally, this implies trans women and trans
men are deviant and not actually female or male, respectively, espe-
cially when the selection is ordered as “male,” “female,” “MTF,”
and“FTM.”
156–158
Usage of “transgender male” and “transgender
female” may be confusing as well, as the terms have varied over
time. For instance, some sources use “transgender male” or
“transsexual male” to refer to a trans man,
152,153
while others used
it to refer to a trans woman.
154,155
Further, by separating these
groups in the first place, “male” and “female” are presented as the
norm while “transgender male” and “transgender female” are oth-
Figure 1. The current state of trans healthcare education, wherein patients are the primary educators of providers. (A) The percentage of medical students among
365 Canadian medical schools who felt knowledgeable enough to care for transgender patients.
116
(B) Percentage of transgender patients who reported having a
negative experience with a healthcare provider in the 2015 U.S. Transgender Survey (USTS).
1
(C) The number of LGBTQ education hours
117
and estimated per-
centage of transgender education hours,
116,118
based on percentage hours in other disciplines,
119
compared with hours in nutrition and microbiology.
120,121
The
total number of hours was conservatively estimated based on 1100 hours of instruction in the first 2 years of medical school. We estimate that approximately
18.3 minutes of medical education is spent on transgender-related care, care which is potentially life-saving for millions of people.
122–125
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ered.
138,156–159
The separation can insinuate that transgender peo-
ple are not their stated gender and that separation is cited heavily
in transphobic and exclusionary actions.
160–162
Additionally, it has
been noted that terms like “FTM” and “MTF” are likely to be mis-
interpreted and confused within medical systems, with anecdotal
evidence supporting the notion that terms like “FTM top surgery,”
“MTF bottom surgery,” etc. being misunderstood because the ac-
tual procedure is unclear from those phrases alone. In addition to
the cited sources regarding the separation of binary trans identities
from unqualified terms, one of the authors (C.A.K.) ran an infor-
mal 24-hour Twitter poll and received 401 responses, with 84%
noting that the separation implied that “trans woman”/”trans
man” was deviant and “woman”/”man” was normal. Further, just
under 14% of trans men and trans women elected to de-emphasize
their trans status via write-in on the 2015 U.S. Transgender Survey,
even when the question asked was not considering gender identity,
but instead considering general identity terms. For the data meth-
odology used to analyze the U.S. Transgender Survey data, see Sup-
plementary Appendix A, Supplement B. In practice, many binary
transgender persons indicated they would answer “female” over
“MTF” or “transgender female.”
For nonbinary people, being relegated to an “other” category is
often experienced as a literal “othering” whereas the inclusion of a
“nonbinary” category communicates inclusion.
136,138,158,163
Unfor-
tunately, intake forms guided by the Veteran Affairs’ “Self-Identified
Gender Identity” initiative employ such exclusionary linguistic prac-
tices. The initiative enforces a distinction between transgender and
cisgender individuals by providing patients the options of “male,”
“female,” “transman,” “transwoman,” “other,” and “the individual
chooses not to answer.”
168
Additionally, the inclusion of
“transwoman” and “transman” is not best practice or grammati-
cally correct. The othering effect this has is another subtle linguistic
turnoff to transgender patients. “Trans” is an adjective and the cor-
rect wording would be “trans woman” or “trans man” with a
space.
164–167
EHRs should accurately record transgender people’s
gender based on their gender identity as male, female, nonbinary,
etc. such as that presented in Figure 3 (see also the additional supple-
mentary tables for further discussions of possible regional exten-
sions).
In addition to avoiding derogatory and othering terms when re-
ferring to transgender people’s gender, EHRs should encode their
correct name and pronouns. Accurately recording person’s name
and pronouns without labelling either as preferred or chosen is nec-
essary to improve transgender health.
176
English-language pronoun
sets have begun to be codified in some EHRs.
175
For instance,
LOINC provides an answer list for reported personal pronouns
(https://loinc.org/90778-2/), and the HL7 Gender Harmony Project
has announced inclusion of pronouns per their current balloting pro-
cess (for more information on pronouns and for example use cases,
see https://www.mypronouns.org/what-and-why and https://pro-
noun.is/). Usage of the correct name and pronouns is linked to lower
risk of depression, suicidal ideation, and suicidal behavior among
trans people.
59,96,177
Adding pronoun-related information in EHRs can easily be mod-
eled as part of the software, with example usage sentences provided
using an automated system, some of which are open source.
178–180
A potential setup for asking a person their pronouns is shown in Fig-
ure 2 but giving one’s pronouns and asking for the patients’ during
all clinical interactions should be made routine in all patient care.
Pronoun information can also be included with a list of utilized titles
or honorifics. An algorithm connected to a person’s selected pro-
nouns or titles can be used to automatically set the appropriate
terms in the provider’s notes.
While it is essential for the medical provider to have current and
accurate information, it is also necessary for frontline staff to have
sufficient training to conduct intake without misgendering or dis-
tressing transgender patients. Misgendering patients fosters distrust
when the healthcare system is already perceived as unsafe by many
transgender people and can lead to poor health outcomes.
59,96
The
healthcare system must also undergo transformational change, and
we ask for more than just brief intervention-based training, but
rather for a system in which transgender care knowledge is inte-
grated into the pedagogy of healthcare disciplines.
130
All gender-related demographic information should be modifi-
able by patients without a provider’s consent. Requiring a medical
provider to change the data may (1) unnecessarily out the patient to
the provider, (2) lead to potentially transphobic or wrong informa-
tion being entered given the state of LGBTQ medical education, or
(3) pathologize and medicalize one’s status as transgender. Regard-
less of how EHR data is recorded, transgender patients must be as-
sured of their autonomy, privacy, and confidentiality throughout
the process.
183
As one trans person put it, “If you can’t even go to
the bathroom without fearing for your safety, then why would you
feel safe disclosing your [identity] in a... medical setting?”
184
From the researcher’s perspective
Used appropriately, EHRs can improve the quality of care and re-
search on transgender patient populations by facilitating consistency
Figure 2. A potential question to ask an individual their pronouns. Individuals
may use or be comfortable with multiple sets of pronouns, hence “choose all
that apply.” Neopronouns were added based on the 2 most recent Gender
Censuses (2020, 2021), in which over 24 000 and 44 000 nonbinary people, re-
spectively, were queried about their terminological usages.
181,182
Pronoun
sets could be shifted in or out based on usage statistics on a local level over a
period of time. Having a pronoun not listed could alert the medical provider
about pronoun usage prior to the encounter. Selecting “prefer not to re-
spond; prefer not to disclose” or the like could trigger a series of potential pri-
vacy options, wherein the patient could determine pronouns for various
kinds of healthcare encounters depending on safety, presentation, etc.
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and comprehensiveness in population definition. Transgender preva-
lence estimates can differ significantly based on case definition;
therefore, patient self-identification is the gold standard.
85,185
Usage
of methodologies such as ICD codes or free text linked primarily to
procedures or diagnostics considered trans-related prioritizes White,
middle-class transgender persons because these individuals showcase
Figure 3. Examples of 2 ways to ask for identification of transgender identity: direct method (1-step) and indirect method (2-step); indicates different options that
may be used to similar effect in certain circumstances. In general, it should be clear that this information is not a proxy for karyotype or organ inventory, which
should be ascertained independently (see “Additional Considerations”). However, it is important to include for providers, researchers, and patients, as patients
might not have karyotype- or organ inventory–based knowledge and tests may be unaffordable, unavailable, or unnecessarily invasive. Note 1: For neonates and
infants for which gender identity has not yet developed, a medical provider could enter “unknown,” “uncertain,” “undifferentiated,” or “none.” Note 2: This may
only be appropriate in some jurisdictions as the original birth certificate may no longer officially exist (such as in Germany). It does resolve ambiguity in a situa-
tion wherein a patient has been issued a new birth certificate with an updated gender marker. Additionally, there may be values and options for this question that
differ significantly by jurisdiction. Note 3: “X” is allowed in some jurisdictions, such as in New York City, Washington DC, New Jersey, California, etc. and has
been recently approved for federal documentation in the U.S.
170
While occasionally intersex is considered a gender identity or as an assigned gender at birth,
this is commonly thought of as inappropriate, because intersex people can have many different gender identities or assigned genders at birth (some intersex peo-
ple do identify their gender identity as “intersex” or “hermaphrodite” [typically as a form of reclamation], but these identifications can adequately be covered by
“A gender not listed [please specify]” in most cases).
171
For more information on intersex-inclusive question design, see “Intersex Data Collection: Your Guide to
Question Design.”
172
It is also important to note that birth certificates may change to not include gender markers or may not be consistent from jurisdiction to ju-
risdiction.
111,173,174
Therefore, a two-step is simply a better proxy to gender- and/or sex-related information than a one-step, which may be replaced in the future
with more accurate models incorporating information like hormonal milieau.
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higher utilization of gender-affirming hormone therapies and surger-
ies,
1,186,187
higher rates of insurance coverage,
188
lower poverty
rates,
1,189
and lower mortality rates.
190,191
There are 2 common methods for patient self-identification (Fig-
ure 3).
136,138,156,157,192
Note that the answers provided in Figure 3
are placeholders and reference the set of tables derived in the addi-
tional supplementary tables, which provide further notes and inter-
national implications/considerations..
Both methods have significant advantages for researchers collect-
ing data on transgender persons. In the first version, all individuals
who responded “yes” in their most recent intake forms have self-
identified as transgender.
The second casts a wider net. If a person selects “Male” for both
questions, they are considered a cisgender man, whereas a person
who selects “Female” as a gender identity then “Male” as their
AGAB would be considered a transgender woman.
192,193
This
method also captures nonbinary persons who may not consider
themselves transgender. It also includes persons who have under-
gone transition-related processes and no longer consider themselves
transgender. It is crucial to emphasize that the gender identity ques-
tion should be asked first, as asking for a person’s AGAB first
implies that AGAB is an individual’s “real” gender, denying the
individual’s lived experience.
194
The 2-step methodology has the distinct advantage that we can
split our transgender population into “assigned male at birth” or
“assigned female at birth” (or other gender assignment designa-
tions), as well as into “trans women” (answering “Female,” then
“Male”), “trans men” (answering “Male,” then “Female”), and
“nonbinary persons” (if using umbrella terminology, all additional
answers which differ and do not fit into binary categorizations).
This disaggregation is useful in data collection because it accurately
denotes the patient’s gender as indicated by self-report. It also ena-
bles providers to offer medically relevant testing and services based
on AGAB (eg, pap smears and prostate exams) and organ inventory
(see Additional Considerations). Best practice recommendations for
screening of transgender patients should be individualized based on
organ history and cumulative exposure to hormones.
195
Implemen-
tation of these goals is facilitated by accurate SOGI documentation
in the EHR, but administrators should be cautious of being overre-
liant on automated screening rules in any setting.
196
The 2-step process leads to an increased ascertainment of trans-
gender status.
183,197
Cisgender and transgender persons understand
the 2-step thoroughly and in a manner that makes for more com-
plete and more accurate data analytics.
192,193,198–200
The UCSF
Center of Excellence for Transgender Health, Fenway Health in Bos-
ton, the Mayo Clinic, and the U.S. Centers for Disease Control and
Prevention all recommend using some form of the 2-step process.
201
Anecdotally, it has been mentioned that some individuals dislike the
2-step process. However, in the authors’ experience, this is usually
because the reasoning behind asking the questions has not be ade-
quately explained to the patient.
193
In one author’s experience
(C.A.K.), discussion of accuracy of data collection and what that
data collection could be used for (for instance, to indicate correct
reference ranges for medical testing), followed by discussion of pri-
vacy standards, ameliorated any distrust of the 2-step process.
To highlight the limitations of current EHR data capture, we ex-
amined the Medical Information Mart for Intensive Care-III
(MIMIC-III) database, a de-identified database of the EHRs of over
46 000 emergency department patients.
202
“Gender” in the system
is defined as the “genotypical sex of the patient,” which can be ana-
lyzed as meaning AGAB.
203
This is inaccurate, as (1) the patients
were not mass genotyped and (2) investigation of clinical notes re-
garding persons labeled as transgender revealed that this was the
correct AGAB about 54% of the time. Identification by ICD–Ninth
Revision–Clinical Modification codes in the diagnostics table reveals
that only 46% of patients identified as transgender in notes were
identified as such by ICD codes.
204–207
This may be due to a history
(and current reality) of health insurance denials for trans persons,
meaning that providers adapted to using non–trans-related codes to
avoid treatments being flagged as trans care.
208
To find out which patients were transgender men, transgender
women, or nonbinary persons was difficult, as it required manual
full review of all patients’ charts. No nonbinary persons were
detected, but this could reflect patient discomfort disclosing their
identity or the decision to report a binary trans identity to ease ac-
cess to desired care.
183
Alternatively, it might indicate that whoever
entered the notes failed to correctly codify disclosed identities.
183
If
we assume that all transgender persons in the MIMIC-III sample
were trans men or trans women, correct pronouns were used <40%
of the time in notes.
204,205
It is extremely likely that many transgen-
der persons were not identified at all, as many do not disclose their
status as transgender.
1
ADDITIONAL CONSIDERATIONS
A number of proposals related to transgender data collection proto-
cols include sections calling for organ inventories and karyotyp-
ing.
209–211
However, there is little discussion considering wide
implementation of such systems.
210
Karyotyping can be performed
relatively easily, but is omitted from most extant SOGI vocabularies,
with atypical karyotype results tracked under disease or disorder hi-
erarchies or on a “problem list.”
Organ inventories using a presence/absence system are effective
in showcasing differences in anatomy quickly and can display more
medically salient information than a person’s gender identity or
AGAB alone.
212
Some implementations permit addition of free-text
comments to document pertinent anatomical details.
213
All patients
can benefit from usage of organ inventories, regardless of transgen-
der status.
The difficulty with clinical decision making based on purely pres-
ence- or absence-based organ inventories lies in the plethora of pos-
sible permutations and health risk profiles associated with
anatomical features, of which medical providers might not be aware.
For instance, organs and tissues are oftentimes not clearly demar-
cated (eg, in ovotesticular tissue), some anatomical features may de-
velop unexpectedly, some organs or tissues might be partially
present in certain situations, and some organ combinations might be
unanticipated. For instance, persons assigned female at birth persons
have shown some evidence of prostatic tissue growth following ex-
tended testosterone therapy.
214
There may also be difficulties repre-
senting chest cancer risks following many forms of chest
reconstruction or contouring in individuals assigned female at
birth.
215,216
This can be a serious issue if an individual has a BRCA
mutation or other familial cancer syndrome.
217
Procedures like
penis-preserving vaginoplasty or vagina-preserving phalloplasty
218
may contradict binarist systems that do not consider it possible for
an individual to have a penis and vagina simultaneously.
Therefore, usage of a modifiable presence and absence system
with integrated anatomical terminology (such as that seen in
SNOMED CT) offers a reasonable entry point. The patient would
be provided a list of common organs to consider, with presence, ab-
sence, and something else options for each. At the bottom of the list,
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there would be a place to clarify the “something else” selections and
to indicate any additional presence and absence data not included in
the list. Following this, a provider or administrator would enter the
information into the EHR, which could then be transformed into an
image of the body with present and absent organs highlighted ap-
propriately and with text notes included in full. Such information
could be assessed quickly visually and be integrated easily into exist-
ing clinical workflows. A brief discussion of how this workflow
could be tested and rolled out is included in Supplementary Appen-
dix A, Supplement A.
Gender identity and AGAB questions are important to preserve
alongside organ inventory, as organ status cannot always easily be
ascertained. There are cases wherein a patient’s privacy should be
respected, and cases in which invasive procedures may be required
to “check” for particular organ statuses. Patients may not remember
particular surgical and organ histories, be aware of them, or neces-
sarily understand the associated vocabulary. This is pertinent to con-
sider when caring for intersex persons, who may have had medically
unnecessary surgeries performed on them without their knowl-
edge,
219–222
as well as when considering general language barriers in
health care.
223–225
Having both systems side by side reduces the
chance for medical error.
In addition to organ inventories, karyotyping (and related ge-
netic laboratory techniques) may be important to showcase when
considering the impacts of certain chromosomal conditions.
226–228
However, while karyotyping can be useful in select cases, it is ulti-
mately less informative than other inventories that have been pro-
posed. Karyotyping should only be performed or recorded at the
discretion of the patient, involve full privacy protections, and should
only be considered alongside other data for prognostics and diagnos-
tics.
DISCUSSION AND CONCLUSION
In part owing to the absence of trans voices leading trans research
teams, cisgender researchers doing trans research often fail to con-
sider the ethical and material implications of their study designs,
methods, and underlying assumptions.
51,60,66,77,229–240
These
researchers, and the informaticists who codify their assumptions,
have contributed and continue to contribute to the epidemics of
transphobic violence we see today.
1,3,10,12,14,52,55,241–245
The 2-step validation process proposed above meets the needs of
patients, clinicians, and researchers, and is preferred by all 3
groups.
138,157,192
We therefore ask the American Medical Informat-
ics Association and its members to endorse the 2-step method pre-
sented in Figure 3 as a starting point for collecting gender-related
information in EHRs. It is important to carefully select the options
provided in coordination with local gender-diverse communities to
avoid anything inaccurate, confusing, pathologizing, transphobic, or
intersexphobic. This involvement is vital to ensure locally relevant
data collection, but also to afford community members the opportu-
nity to be active participants in their own health. An outline of some
identities to consider as a starting point is available as part of the ad-
ditional supplementary tables. We also call for more research into
ethical implementation of organ inventories, hormone inventories,
and karyotyping in general medical settings and in EHR systems.
Further, cultural considerations should inform procedural
aspects of data collection, including physical location and employee
training. Financial support for transgender participation in coordi-
nated, multidisciplinary community advisory boards and employee-
based medical coding standards boards within healthcare-affiliated
organizations to center the needs of trans persons in the EHR and
improve clinical decision making is a critical next step to achieve
data-driven, gender-affirming care.
FUNDING
TS was supported by grant number T32HS000029 from the Agency
for Healthcare Research and Quality. HT was supported by the
Agency for Healthcare Research & Quality Grant Number K12-HS-
026385 and the National Institute on Drug Abuse grant number
5R25DA035692-08. The content is solely the responsibility of the
authors and does not necessarily represent the official views of the
Agency for Healthcare Research and Quality and those of the Na-
tional Institute on Drug Abuse. The other authors received no spe-
cific funding for this work.
AUTHOR CONTRIBUTIONS
CK conceived the research idea and was the primary author of the
manuscript. AE, FA, HT, TS, TG, LH, ZD, RQ, AR, EG, OD, EL,
EP, SS, and RK contributed several critical revisions and provided
significant feedback on discussed systems. AE performed the single
analysis regarding the U.S. Transgender Survey data in footnote 10,
covered under the auspices of her Institutional Review Board at the
University of Southern California. EG designed Figure 1.SS
designed Figures 2 and 3. All authors agree to be accountable for all
aspects of the work in ensuring that questions related to the accu-
racy or integrity of any part of the work are appropriately investi-
gated and resolved. CK performed analyses using the MIMIC-III
database, which were published in prior work and did not specially
require Institutional Review Board approval (all records therein are
de-identified). A CITI training course (entitled “Data or Specimens
Only Research”) was required and taken in order to gain access to
the database.
SUPPLEMENTARY MATERIAL
Supplementary material is available at Journal of the American
Medical Informatics Association online .
DATA AVAILABILITY STATEMENT
No new data were generated or analyzed in support of this piece.
Requests for 2015 United States Transgender Survey data can be
made here: https://www.ustranssurvey.org/data-requests. Informa-
tion about requesting access to MIMIC-III records can be found at
https://mimic.physionet.org/gettingstarted/access/.
CONFLICT OF INTEREST STATEMENT
None declared.
ACKNOWLEDGMENTS
This document adheres to the principles outlined in the Declaration
of Helsinki. Special thanks to the following individuals for their crit-
ical assistance in this work: Judith W. Dexheimer, Laur Bereznai,
and Os Keyes.
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REFERENCES
1. James SE, Herman JL, Rankin S, et al. The Report of the 2015 U.S.
Transgender Survey. 2016. https://transequality.org/sites/default/files/
docs/usts/USTS-Full-Report-Dec17.pdf. Accessed October 5, 2020.
2. Roberts TK, Fantz CR. Barriers to quality health care for the transgender
population. Clin Biochem 2014; 47 (10–11): 983–7.
3. Suess Schwend A. Trans health care from a depathologization and hu-
man rights perspective. Public Health Rev 2020; 41: 3.
4. Kcomt L, Gorey KM, Barrett BJ, et al. Healthcare avoidance due
to anticipated discrimination among transgender people: a call to
create trans-affirmative environments. SSM Popul Health 2020; 11:
100608.
5. Wills M. A history of transphobia in the medical establishment. 2020.
https://daily.jstor.org/a-history-of-transphobia-in-the-medical-establish-
ment/. Accessed May 6, 2021.
6. Serano J. Trans people still disordered in DSM. Social Text. 2013.
https://socialtextjournal.org/periscope_article/trans-people-still-disor-
dered-in-dsm/. Accessed May 5, 2021.
7. Whalen K. (In)validating transgender identities: progress and trouble in
the DSM-5. https://www.thetaskforce.org/invalidating-transgender-
identities-progress-and-trouble-in-the-dsm-5/. Accessed May 5, 2021.
8. GLAAD Media Reference Guide. 10th ed. https://www.glaad.org/sites/
default/files/GLAAD-Media-Reference-Guide-Tenth-Edition.pdf.
Accessed August 10, 2021.
9. Davy Z. The DSM-5 and the politics of diagnosing transpeople. Arch Sex
Behav 2015; 44 (5): 1165–76.
10. Inch E. Changing minds: the psycho-pathologization of trans people. Int
J Ment Health 2016; 45 (3): 193–204.
11. Ahmed S. Complaint as diversity work. https://www.youtube.com/
watch?v¼JQ_1kFwkfVE. Accessed May 3, 2021.
12. Ashley F. The misuse of gender dysphoria: toward greater conceptual
clarity in transgender health. Perspect Psychol Sci 2019 Nov 20 [E-pub
ahead of print]. doi:10.1177/1745691619872987.
13. Winters K. Ten reasons why the transvestic disorder diagnosis in the
DSM-5 Has Got to Go. 2010. https://gidreform.wordpress.com/2010/
10/16/ten-reasons-why-the-transvestic-fetishism-diagnosis-in-the-dsm-
5-has-got-to-go/. Accessed August 10, 2021.
14. Lev AI. Disordering gender identity: gender identity disorder in the
DSM-IV-TR.J Psychol Hum Sex 2006; 17 (3–4): 35–69.
15. Khoury B, Langer EJ, Pagnini F. The DSM: mindful science or mindless
power? A critical review. Front Psychol 2014; 5: 602. doi:10.3389/
fpsyg.2014.00602.
16. Castro-Peraza ME, Garc
ıa-Acosta JM, Delgado N, et al. Gender identity:
the human right of depathologization. Int J Environ Res Public Health
2019; 16 (6): 978.
17. McNabb C. Nonbinary Gender Identities: History, Culture, Resources.
Lanham, MD: Rowman & Littlefield; 2018.
18. Rowson EK. The effeminates of early Medina. J Am Orient Soc 1991;
111 (4): 671.
19. Francis AG. On a Romano-British castration clamp used in the rights of
cybele. Proc R Soc Med 1926; 19 (Sect Hist Med): 95–110.
20. Burton R. KAMA Sutra: The Original English Translation by Sir Richard
Francis Burton. Frankfurt am Main, Germany: Musaicum Books; 2017.
21. Cassius D. Roman History, Volume I: Books 1-11. Cambridge, MA:
Harvard University Press; 1914.
22. Kronk C, Dexheimer J. An Ontology-Based Review of Transgender Litera-
ture: Revealing a History of Medicalization and Pathologization; 2021.
23. Caldwell C, Keshavan MS. Schizophrenia with secondary transsexual-
ism. Can J Psychiatry 1991; 36 (4): 300–1.
24. Calnen T. Gender identity crises in young schizophrenic women. Per-
spect Psychiatr Care 1975; 13 (2): 83–8.
25. Kampik E, Mu¨ ller N, Soyka M. [Manifestation of schizophrenic psycho-
sis in a transsexual patient following surgical sex change]. Nervenarzt
1989; 60 (6): 361–3.
26. Lothstein LM, Roback H. Black female transsexuals and schizophrenia:
a serendipitous finding? Arch Sex Behav 1984; 13 (4): 371–86.
27. Brown JRWC. Paraphilias: sadomasochism, fetishism, transvestism and
transsexuality. Br J Psychiatry 1983; 143: 227–31.
28. Blancard R. Clinical observations and systematic studies of autogyne-
philia. J Sex Marital Ther 1991; 17 (4): 235–51.
29. Modestin J, Ebner G. Multiple personality disorder manifesting itself un-
der the mask of transsexualism. Psychopathology 1995; 28 (6): 317–21.
30. Brenner I. On trauma, perversion, and “multiple personality.” J Am Psy-
choanal Assoc 1996; 44 (3): 785–814.
31. Murray JF. Borderline manifestations in the Rorschachs of male trans-
sexuals. J Pers Assess 1985; 49 (5): 454–66.
32. Marantz S, Coates S. Mothers of boys with gender identity disorder: a
comparison of matched controls. J Am Acad Child Adolesc Psychiatry
1991; 30 (2): 310–5.
33. Hartmann U, Becker H, Rueffer-Hesse C. Self and gender: narcissistic
pathology and personality factors in gender dysphoric patients. Prelimi-
nary results of a prospective study. Int J Transgenderism 1997; 1.
34. Marks IM, Mataix-Cols D. Four-year remission of transsexualism after
comorbid obsessive–compulsive disorder improved with self-exposure
therapy: case report. Br J Psychiatry 1997; 171: 389–90.
35. Walsh RJ, Krabbendam L, Dewinter J, et al. Brief report: gender identity
differences in autistic adults: associations with perceptual and socio-
cognitive profiles. J Autism Dev Disord 2018; 48 (12): 4070–8.
36. Brown LXZ. Gendervague: at the intersection of autistic and trans expe-
riences. https://www.aane.org/gendervague-intersection-autistic-trans-
experiences/. Accessed May 6, 2021.
37. ASAN Joint statement on the death of Kayden Clarke. 2016. https://
autisticadvocacy.org/2016/02/asan-joint-statement-death-of-kayden-
clarke/. Accessed May 6, 2021.
38. Burns K. How our society harms trans people who are also autistic.
2017. https://medium.com/the-establishment/how-our-society-harms-
trans-people-with-autism-9766edc6553d. Accessed May 6, 2021.
39. Adams N, Liang B. Trans and Autistic: Stories from Life at the Intersec-
tion. London, Philadelphia, PA: Jessica Kingsley; 2020.
40. Land
en M, Rasmussen P. Gender identity disorder in a girl with autism:
a case report. Eur Child Adolesc Psychiatry 1997; 6 (3): 170–3.
41. Carlile A. The experiences of transgender and non-binary children and
young people and their parents in healthcare settings in England, UK:
interviews with members of a family support group. Int J Transgend
Health 2020; 21 (1): 16–32.
42. Kula K, Słowikowska-Hilczer J. [Consequences of disturbed sex-
hormone action in the central nervous system: behavioral, anatomical
and functional changes]. Neurol Neurochir Pol 2003; 37 (Suppl 3):
19–38.
43. Steiner BW. Gender Dysphoria: Development, Research, Management.
New York, NY: Springer; 1985.
44. Jasuja GK, de Groot A, Quinn EK, et al. Beyond gender identity disorder
diagnoses codes: an examination of additional methods to identify trans-
gender individuals in administrative databases. Med Care 2020; 58 (10):
903–11.
45. Bartnik P, Kacperczyk-Bartnik J, Pr
ochnicki M, et al. Does the status
quo have to remain? The current legal issues of transsexualism in Poland.
Adv Clin Exp Med 2020; 29 (3): 409–17.
46. Joseph A, Cliffe C, Hillyard M, et al. Gender identity and the manage-
ment of the transgender patient: a guide for non-specialists. J R Soc Med
2017; 110 (4): 144–52. PMC][10.1177/0141076817696054]
[28382847]
47. Majid DSA, Burke SM, Manzouri A, et al. Neural systems for own-body
processing align with gender identity rather than birth-assigned sex.
Cereb Cortex 2020; 30 (5): 2897–909.
48. O’Neill T, Wakefield J. Fifteen-minute consultation in the normal child:
Challenges relating to sexuality and gender identity in children and
young people. Arch Dis Child Educ Pract Ed 2017; 102 (6): 298–303.
49. Why is my Provider Using Gender Dysphoria Codes?: Information for
transgender, nonbinary, gender nonconforming/expansive and question-
ing patients. https://www.uwhealth.org/files/uwhealth/docs/gender_serv-
ices/DI-165839-18_Gender_Services_Patient_Coding_Booklet.pdf.
Accessed January 5, 2021.
Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0 9
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021

50. Foer D, Rubins DM, Almazan A, Chan K, Bates DW, Hamnvik O-PR.
Challenges with accuracy of gender fields in identifying transgender
patients in electronic health records. J Gen Intern Med 2020; 35 (12):
3724–5.
51. Serano JM. The case against autogynephilia. Int J Transgenderism 2010;
12 (3): 176–87.
52. Rodriguez A, Agardh A, Asamoah BO. Self-reported discrimination in
health-care settings based on recognizability as transgender: a cross-
sectional study among transgender U.S. citizens. Arch Sex Behav 2018;
47 (4): 973–85.
53. Glick JL, Theall KP, Andrinopoulos KM, Kendall C. The role of discrim-
ination in care postponement among trans-feminine individuals in the
U.S. National Transgender Discrimination Survey. LGBT Health 2018;
5 (3): 171–9.
54. Jaffe S. LGBTQ discrimination in US health care under scrutiny. Lancet
2020; 395 (10242): 1961.
55. McHugh PR. Surgical sex: why we stopped doing sex change operations.
2004. https://www.firstthings.com/article/2004/11/surgical-sex.
Accessed January 5, 2021.
56. Ashley F. Science has always been ideological, you just don’t see it. Arch
Sex Behav 2019; 48 (6): 1655–7.
57. Powell K, Terry R, Chen S. How LGBTþscientists would like to be in-
cluded and welcomed in STEM workplaces. Nature 2020; 586 (7831):
813–6.
58. Tanenbaum TJ. Publishers: let transgender scholars correct their names.
Nature 2020; 583 (7817): 493.
59. Russell ST, Pollitt AM, Li G, Grossman AH. Chosen name use is linked
to reduced depressive symptoms, suicidal ideation, and suicidal behavior
among transgender youth. J Adolesc Health 2018; 63 (4): 503–5.
60. Turban J. The disturbing history of research into transgender identity.
Sci Am 2020. https://www.scientificamerican.com/article/the-disturbing-
history-of-research-into-transgender-identity/. Accessed January 9,
2021.
61. Radix AE. Addressing needs of transgender patients: the role of family
physicians. J Am Board Fam Med 2020; 33 (2): 314–21.
62. Hamer D. New “scientific” study on sexuality, gender is neither new nor
scientific. 2016. https://www.advocate.com/commentary/2016/8/29/
new-scientific-study-sexuality-gender-neither-new-nor-scientific.
Accessed January 19, 2021.
63. Serano J. A matter of perspective: a transsexual woman-centric critique
of dreger’s “scholarly history” of the Bailey controversy. Arch Sex Behav
2008; 37 (3): 491–4.
64. Pickstone-Taylor SD. Children with gender nonconformity. J Am Acad
Child Adolesc Psychiatry 2003; 42 (3): 266; author reply 266–268.
65. Bollinger A. Medical school suspends study that would have tortured
transgender people for science. 2021. https://www.lgbtqnation.com/
2021/02/medical-school-suspends-study-tortured-transgender-people-
science/. Accessed February 5, 2021.
66. Baska M. Controversial trans study that “purposefully induced dys-
phoria” suspended over “grave” ethical concerns. PinkNews. 2021.
https://www.pinknews.co.uk/2021/02/05/ucla-trans-medical-study-gen-
der-dysphoria/. Accessed February 15, 2021.
67. Highleyman L. Who was Lou Sullivan? Seattle Gay News. http://
sgn.org/sgnnews36_09/mobile/page30.cfm. Accessed August 10,
2021.
68. Bowles S. A death robbed of dignity mobilizes a community. Washington
Post. 1995.https://www.washingtonpost.com/archive/local/1995/12/10/
a-death-robbed-of-dignity-mobilizes-a-community/2ca40566-9d67-
47a2-80f2-e5756b2753a6/. Accessed August 10, 2021.
69. Parsons V. Trans woman left to die with coronavirus symptoms by para-
medics who “refused to treat her” because she had HIV. PinkNews.
2020. https://www.pinknews.co.uk/2020/06/01/alejandra-monocuco-
trans-woman-dead-coronavirus-hiv-positive-bogota/. Accessed August
10, 2021.
70. Persad X. LGBTQ-inclusive data collection: a lifesaving imperative.
2019. https://assets2.hrc.org/files/assets/resources/HRC-LGBTQ-Data-
Collection-Report.pdf. Accessed February 3, 2021.
71. Cahill SR, Makadon HJ. If they don’t count us, we don’t count: trump
administration rolls back sexual orientation and gender identity data col-
lection. LGBT Health 2017; 4 (3): 171–3.
72. Grasso C, Goldhammer H, Funk D, et al. Required sexual orientation
and gender identity reporting by US health centers: first-year data. Am J
Public Health 2019; 109 (8): 1111–8.
73. Suen LW, Lunn MR, Katuzny K, et al. What sexual and gender minority
people want researchers to know about sexual orientation and gender
identity questions: a qualitative study. Arch Sex Behav 2020; 49 (7):
2301–18.
74. Singh S, Durso LE, Tax A. The Trump administration is rolling back
data collection on LGBT older adults. 2017. https://www.americanpro-
gress.org/issues/lgbtq-rights/news/2017/03/20/428623/trump-adminis-
tration-rolling-back-data-collection-lgbt-older-adults/. Accessed
February 3, 2021.
75. Turney S, Carvalho MM, Sousa ME, et al. Support transgender scientists
post–COVID-19. Science 2020; 369 (6508): 1171–1172.
76. Kluge E-HW. Ethics in Health Care: A Canadian Focus. 1st ed. Don
Mills, Canada: Pearson Canada; 2013.
77. Bauer G, Devor A, Heinz M, et al. CPATH ethical guidelines for research
involving transgender people & communities. 2019. https://cpath.ca/wp-
content/uploads/2019/08/CPATH-Ethical-Guidelines-EN.pdf. Accessed
May 6, 2021.
78. Rao TSS, Radhakrishnan R, Andrade C. Standard operating procedures
for clinical practice. Indian J Psychiatry 2011; 53 (1): 1–3.
79. Sajdak R, Trembath L, Thomas KS. The importance of standard
operating procedures in clinical trials. J Nucl Med Technol 2013;
41 (3): 231–3.
80. Hollmann S, Frohme M, Endrullat C, et al.; Cost Action CA15110. Ten
simple rules on how to write a standard operating procedure. PLoS Com-
put Biol 2020; 16 (9): e1008095.
81. Ewald ER, Guerino P, Dragon C, et al. Identifying Medicare beneficiaries
accessing transgender-related care in the era of ICD-10. LGBT Health
2019; 6 (4): 166–73.
82. Proctor K, Haffer SC, Ewald E, et al. Identifying the transgender
population in the Medicare program. Transgend Health 2016; 1 (1):
250–65.
83. Blosnich JR, Brown GR, Wojcio S, et al. Mortality among veterans with
transgender-related diagnoses in the Veterans Health Administration,
FY2000-2009. LGBT Health 2014; 1 (4): 269–76.
84. Canner JK, Harfouch O, Kodadek LM, et al. Temporal trends in gender-
affirming surgery among transgender patients in the United States.
JAMA Surg 2018; 153 (7): 609–16.
85. Collin L, Reisner SL, Tangpricha V, et al. Prevalence of transgender
depends on the “case” definition: a systematic review. J Sex Med 2016;
13 (4): 613–26.
86. Oliven JF. Sexual Hygiene and Pathology: A Manual for the Physician
and the Professions. 2nd ed. Lippincott; 1965.
87. Prince V. The “Transcendents” or “Trans” people. Int J Transgenderism
2005; 8 (4): 39–46.
88. Lynn MS. Definitions of terms commonly used in the transvestite-
transsexual community. TV-TS Tapestry 1988; (5): 19–31.
89. Molina NG. A transgender dictionary. Focus San Franc Calif 1998; 13:
5–6.
90. GLAAD Media Reference Guide. 7th ed. Los Angeles, CA: GLAAD;
2008.
91. transgender. 2011. https://ahdictionary.com/word/search.html?
q¼TRANSGENDER. Accessed August 10, 2021.
92. Primer. 2018. https://www.translanguageprimer.org/primer/. Accessed
May 3, 2021.
93. PFLAG National Glossary of Terms. 2021. https://pflag.org/glossary.
Accessed May 3, 2021.
94. Olson J, Forbes C, Belzer M. Management of the transgender adolescent.
Arch Pediatr Adolesc Med 2011; 165 (2): 171–6.
95. Giami A, Beaubatie E. Gender identification and sex reassignment sur-
gery in the trans population: a survey study in France. Arch Sex Behav
2014; 43 (8): 1491–501.
10 Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021

96. Dolan IJ, Strauss P, Winter S, et al. Misgendering and experiences of
stigma in health care settings for transgender people. Med J Aust 2020;
212 (4): 150–1.e1.
97. Ashley F. “Trans” is my gender modality: a modest terminological pro-
posal. https://www.florenceashley.com/uploads/1/2/4/4/124439164/flor-
ence_ashley_trans_is_my_gender_modality.pdf. Accessed April21, 2021.
98. Braidotti R. The uses and abuses of the sex/gender distinction in Euro-
pean feminist practices. In: Translating Gender. Utrecht, Netherlands:
European Association for Gender Research, Education and Documenta-
tion; 5–26. https://atgender.eu/wp-content/uploads/sites/207/2015/12/
Translating-Gender-2012.pdf. Accessed May 3, 2021.
99. Jegerstedt K. A short introduction to the use of “sex” and “gender” in
the Scandinavian languages. In: Translating Gender. Utrecht, Nether-
lands: European Association for Gender Research, Education and Docu-
mentation; 27–8. https://atgender.eu/wp-content/uploads/sites/207/
2015/12/Translating-Gender-2012.pdf. Accessed May 3, 2021.
100. Bahovic E. A short note on the use of “sex” and “gender” in some Slavic
languages. In: Translating Gender. Utrecht, Netherlands: European As-
sociation for Gender Research, Education and Documentation 30–1.
https://atgender.eu/wp-content/uploads/sites/207/2015/12/Translating-
Gender-2012.pdf. Accessed May 3, 2021.
101. Peto¨ A. From a “non-science” to gender analyses? Usage of sex/gender in
Hungarian. In: Translating Gender. Utrecht, Netherlands: European As-
sociation for Gender Research, Education and Documentation; 61–2.
https://atgender.eu/wp-content/uploads/sites/207/2015/12/Translating-
Gender-2012.pdf. Accessed May 3, 2021.
102. Kiuchi A. [Independent and interdependent construal of the self: the cul-
tural influence and the relations to personality traits]. Shinrigaku Kenkyu
1996; 67 (4): 308–13.
103. Goecker D, Korte A. Sex identity disorders in children and adolescents.
Kinderkrankenschwester Organ Sekt Kinderkrankenpflege 2007; 26:
330–2.
104. Tang G, Guo L, Huang X. [An epidemiological study on mental prob-
lems in adolescents in Chengdu, China. Zhonghua Liu Xing Bing Xue
Za Zhi 2005; 26: 878–81.
105. Council of Europe. Sex and gender. https://www.coe.int/en/web/gender-
matters/sex-and-gender. Accessed May 5, 2021.
106. Burgess C, Kauth MR, Klemt C, et al. Evolving sex and gender in elec-
tronic health records. Fed Pract 2019; 36: 271–7.
107. Gender identity and sexual orientation questions. https://grad.ucdavis.
edu/admissions/admission-requirements/gender-identity-and-sexual-ori-
entation-questions. Accessed May 5, 2021.
108. New Student Survey 2018. 2018. https://www.evergreen.edu/sites/de-
fault/files/NSS18-Q25-OLY-Gender.pdf. Accessed May 5, 2021.
109. Birth certificates. 2018. https://www.americanbar.org/groups/public_ed-
ucation/publications/teaching-legal-docs/birth-certificates/#:~:text¼A%
20birth%20certificate%20is%20a,documents%20an%20individual%
20might%20acquire. Accessed May 3, 2021.
110. Editorial: Birth certificate is a legal, not a biological document. Cincin-
nati Enquirer. 2014. https://www.cincinnati.com/story/opinion/editori-
als/2014/02/13/birth-certificate-is-a-legal-not-a-biological-document/
5458545/. Accessed May 3, 2021.
111. Shteyler VM, Clarke JA, Adashi EY. Failed assignments — rethinking
sex designations on birth certificates. N Engl J Med 2020; 383 (25):
2399–401.
112. What do we mean by “sex” and “gender”? 2014. https://web.archive.
org/web/20140923045700/http://www.who.int/gender/whatisgender/
en. Accessed May 3, 2021.
113. State-by-state overview: rules for changing gender markers on birth cer-
tificates. 2017. http://transgenderlawcenter.org/wp-content/uploads/
2016/12/Birth-Cert-overview-state-by-state.pdf. Accessed May 4, 2021.
114. Ten strategies for creating inclusive health care environments for
LGBTQIAþpeople. 2021. https://www.lgbtqiahealtheducation.org/wp-
content/uploads/2021/05/Ten-Strategies-for-Creating-Inclusive-Health-
Care-Environments-for-LGBTQIA-People-Brief.pdf. Accessed May 4,
2021.
115. Schreiber M, Ahmad T, Scott M, et al. The case for a Canadian standard
for 2SLGBTQIAþmedical education. CMAJ 2021; 193 (16): E562–5.
116. Korpaisarn S, Safer JD. Gaps in transgender medical education among
healthcare providers: a major barrier to care for transgender persons.
Rev Endocr Metab Disord 2018; 19 (3): 271–5.
117. Obedin-Maliver J, Goldsmith ES, Stewart L, et al. Lesbian, gay, bisexual,
and transgender-related content in undergraduate medical education.
JAMA 2011; 306 (9): 971–7.
118. Liang JJ, Gardner IH, Walker JA, et al. Observed deficiencies in medical
student knowledge of transgender and intersex health. Endocr Pract
2017; 23 (8): 897–906.
119. Li X. Advocates express need for increased research in transgender
health care. 2017. https://dailybruin.com/2017/06/11/advocates-ex-
press-need-for-increased-research-in-transgender-health-care. Accessed
January 29, 2021.
120. Cuerda C, Schneider SM, Van Gossum A. Clinical nutrition education in
medical schools: results of an ESPEN survey. Clin Nutr 2017; 36 (4):
915–6.
121. Melber DJ, Teherani A, Schwartz BS. A comprehensive survey of preclin-
ical microbiology curricula among US Medical Schools. Clin Infect Dis
2016; 63 (2): 164–8.
122. Stroumsa D. The state of transgender health care: policy, law, and medi-
cal frameworks. Am J Public Health 2014; 104 (3): e31–e38.
123. Lam K. Some Americans are denied “lifesaving” heal th care because they
are transgender. USA Today. 2018. https://www.usatoday.com/story/
news/2018/12/11/transgender-health-care-patients-advocates-call-
improvements/1829307002/. Accessed January 29, 2021.
124. Christensen J. Puberty blockers can be “life-saving” drugs for trans teens,
study shows. CNN. 2020. https://www.cnn.com/2020/01/23/health/
transgender-puberty-blockers-suicide-study/index.htmlAccessed January
29, 2021.
125. Winter S, Conway L. How many trans people are there? A 2011 update
incorporating new data. 2011. https://web.archive.org/web/
20141205022609/http://web.hku.hk/sjwinter/TransgenderASIA/pa-
per-how-many-trans-people-are-there.htm. Accessed August 10, 2021.
126. Johnson N. LGBTQ health education: where are we now? Acad Med J
Med 2017; 92 (4): 432.
127. DeVita T, Bishop C, Plankey M. Queering medical education: systemati-
cally assessing LGBTQI health competency and implementing reform.
Med Educ Online 2018; 23 (1): 1510703.
128. Snelgrove JW, Jasudavisius AM, Rowe BW, et al. Completely out-at-
sea” with “two-gender medicine”: a qualitative analysis of physician-
side barriers to providing healthcare for transgender patients. BMC
Health Serv Res 2012; 12: 110.
129. MacKinnon KR, Ross LE, Rojas Gualdron D, et al. Teaching health pro-
fessionals how to tailor gender-affirming medicine protocols: a design
thinking project. Perspect Med Educ 2020; 9 (5): 324–8.
130. MacKinnon KR, Kia H, Rai N, et al. Integrating trans health knowledge
through instructional design: preparing learners for a continent – not an
island – of primary care with trans people. Educ Prim Care 2021; 32 (4):
198–201. doi:10.1080/14739879.2021.1882885
131. Grant JM, Mottet LA, Tanis J, et al. Injustice at every turn: a report of
the National Transgender Discrimination Survey. 2011. https://www.
transequality.org/sites/default/files/docs/resources/NTDS_Report.pdf.
Accessed January 23, 2021.
132. Donald CA, DasGupta S, Metzl JM, et al. Queer Frontiers in medi-
cine: a structural competency approach. Acad Med J Med 2017; 92
(3): 345–50.
133. Willging C, Gunderson L, Shattuck D, et al. Structural competency in
emergency medicine services for transgender and gender non-
conforming patients. Soc Sci Med 2019; 222: 67–75.
134. Zaidi D. Transgender health in an age of bathroom bills. Acad Med
2018; 93 (1): 9.
135. Cruz TM. Perils of data-driven equity: safety-net care and big data’s elu-
sive grasp on health inequality. Big Data Soc 2020; 7 (1):
205395172092809.
Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0 11
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021

136. Price D. Bad gender measures & how to avoid them. 2018. https://me-
dium.com/@devonprice/bad-gender-measures-how-to-avoid-them-
23b8f3a503a6. Accessed October 1, 2020.
137. Tate CC, Youssef CP, Bettergarcia JN. Integrating the study of transgen-
der spectrum and cisgender experiences of self-categorization from a per-
sonality perspective. Rev Gen Psychol 2014; 18 (4): 302–12.
138. Puckett JA, Brown NC, Dunn T, et al. Perspectives from transgender and
gender diverse people on how to ask about gender. LGBT Health 2020;
7 (6): 305–11.
139. Tudisco J. Survey says “woman, man, or transgender” - how non-
inclusive survey design erases our existence. https://www.ihc.ucsb.edu/
survey-says-woman-man-or-transgender-how-non-inclusive-survey-de-
sign-erases-our-existence/. Accessed January 8, 2021.
140. Transgender FAQ. https://www.hrc.org/resources/transgender-faq.
Accessed January 22, 2021.
141. PFLAG National Glossary of Terms. https://pflag.org/glossary. Accessed
January 22, 2021.
142. Lynsey G. Watching Porn: and Other Confessions of an Adult Entertain-
ment Journalist. New York, NY: Abrams Books; 2017.
143. Escoffier J. Imagining the she/male: pornography and the transsexu-
alization of the heterosexual male. Stud Gend Sex 2011; 12 (4):
268–81.
144. Carrera-Fern
andez MV, DePalma R. Feminism will be trans-inclusive or
it will not be: why do two cis-hetero woman educators support transfe-
minism? Sociol Rev 2020; 68 (4): 745–62.
145. Ritzer G, ed. The Blackwell Encyclopedia of Sociology. Oxford, United
Kingdom: Blackwell; 2007.
146. u/redesckey. Can we please stop using “transmasculine” and
“transfeminine”? r/lgbt. 2019. https://www.reddit.com/r/lgbt/com-
ments/aql7sy/can_we_please_stop_using_transmasculine_and/. Accessed
May 4, 2021.
147. Dark J. I am Not Transmasculine or Transfeminine. 2018. https://me-
dium.com/@whoaitsjoan/i-am-not-transmasculine-or-transfeminine-
9fe0791afa95. Accessed May 4, 2021.
148. @hologramvin. Alternatives to “AFAB” and “AMAB.” Trans Style
Guide. 2019. https://medium.com/@transstyleguide/alternatives-to-afab-
and-amab-d7cf8fe20a72. Accessed May 4, 2021.
149. Mitchell G. Some terms are better than others. 2017. https://transsub-
stantiation.com/some-terms-are-better-than-others-603827adb9b7.
Accessed January 22, 2021.
150. Mere A. 64 terms that describe gender identity and expression. 2019.
https://www.healthline.com/health/different-genders. Accessed January
22, 2021.
151. Bailar S. Terminology. 2015. https://pinkmantaray.com/terminology.
Accessed January 22, 2021.
152. Kang A, Aizen JM, Cohen AJ, et al. Techniques and considerations of
prosthetic surgery after phalloplasty in the transgender male. Transl
Androl Urol 2019; 8 (3): 273–82. PMC][10.21037/tau.2019.06.02]
[31380234]
153. Smith KP, Madison CM, Milne NM. Gonadal suppressive and cross-sex
hormone therapy for gender dysphoria in adolescents and adults. Phar-
macother J Hum Pharmacol Drug Ther 2014; 34 (12): 1282–97.
154. Valera RJ, Sawyer RG, Schiraldi GR. Perceived health needs of inner-city
street prostitutes: a preliminary study. Am J Health Behav 2001; 25 (1):
50–9.
155. Lee C, Basaria S. Syncope in a transsexual male. J Androl 2006; 27 (2):
164.
156. Fonseca S. Designing forms for gender diversity and inclusion. 2017.
https://uxdesign.cc/designing-forms-for-gender-diversity-and-inclusion-
d8194cf1f51. Accessed October 1, 2020.
157. Bauer GR, Braimoh J, Scheim AI, Dharma C. Transgender-inclu-
sive measures of sex/gender for population surveys: mixed-methods
evaluation and recommendations. PLoS One 2017; 12 (5):
e0178043.
158. Holzberg J, Ellis R, Virgile M. Assessing the feasibility of asking
about gender identity in the current population survey: results from
Focus Groups with members of the transgender population. 2017.
https://www.bls.gov/osmr/research-papers/2017/pdf/st170200.pdf.
Accessed January 8, 2021.
159. Ke M. How to make an LGBTQþinclusive survey. 2020. https://uxde-
sign.cc/how-to-make-an-lgbtq-inclusive-survey-bfd1d801cc21. Accessed
January 11, 2021.
160. Stock K. Changing the concept of “woman” will cause unintended
harms. 2018. https://www.economist.com/open-future/2018/07/06/
changing-the-concept-of-woman-will-cause-unintended-harms.
Accessed January 8, 2021.
161. Jenkins K. Amelioration and inclusion: gender identity and the concept
of woman. Ethics 2016; 126 (2): 394–421.
162. Holston-Zannell LB. Black trans women are being murdered in the
streets. Now the Trump administration wants to turn us away from shel-
ters and health care. 2019. https://www.aclu.org/blog/lgbt-rights/trans-
gender-rights/black-trans-women-are-being-murdered-streets-now-
trump. Accessed January 8, 2021.
163. Spiel K, Haimson O, Lottridge D. How to do better with gender on sur-
veys: a guide for HCI researchers. ACM Interact. 2019: 26. https://inter-
actions.acm.org/archive/view/july-august-2019/how-to-do-better-with-
gender-on-surveys?
fbclid¼IwAR38mqjxkk3svBMPKDE8c8WHWlpk0ttHMv42G_
23fLFoNe35Ao3vlLjNp-M. Accessed October 1, 2010.
164. Transgender: using words wisely. 2018. https://emmanuelle.coach/trans-
gender-using-words-wisely/. Accessed January 22, 2021.
165. Lopez G. Why you should always use “transgender” instead of
“transgendered.” Vox. 2015. https://www.vox.com/2015/2/18/
8055691/transgender-transgendered-tnr. Accessed January 22, 2021.
166. Serano J. Whipping Girl: A Transsexual Woman on Sexism and the
Scapegoating of Femininity. 2nd ed. Berkeley, CA: Seal Press; 2016.
167. Gender identity definitions. https://mmt.org/gender-identity-definitions.
Accessed January 22, 2021.
168. Providing health care for transgender and intersex veterans. 2018.
https://www.albuquerque.va.gov/docs/ProvidingHealthCareforTrans-
genderandIntersexVeterans.pdf. Accessed January 13, 2021.
169. Nonbinary? Intersex? 11 U.S. states issuing third gender IDs. Reuters.
2019. https://www.reuters.com/article/us-us-lgbt-lawmaking/nonbinary-
intersex-11-u-s-states-issuing-third-gender-ids-idUSKCN1PP2N7.
Accessed January 8, 2021.
170. Haug O. The State Department Will Finally Allow "X" Gender Marker
on Passports. 2021. https://www.them.us/story/biden-state-department-
allows-x-gender-marker-passports. Accessed July 6, 2021.
171. Intersex is not a gender identity, and the implications for legislation.
2012. https://ihra.org.au/17680/intersex-characteristics-not-gender-
identity/. Accessed January 19, 2021.
172. Intersex data collection: your guide to question design. https://interactad-
vocates.org/intersex-data-collection/. Accessed May 5, 2021.
173. de la Cretaz B. American Medical Association Recommends Removing
Sex From Birth Certificates. 2021. https://www.them.us/story/american-
medical-association-recommends-removing-sex-from-birth-certificates.
Accessed August 10, 2021.
174. Bhatia A, Ferreira LZ, Barros AJD, Victora CG.Who and where are the
uncounted children? Inequalities in birth certificate coverage among chil-
dren under five years in 94 countries using nationally representative
household surveys. Int J Equity Health 2017; 16 (1): 148.
175. More inclusive care for transgender patients using epic. 2017. https://
www.epic.com/epic/post/inclusive-care-transgender-patients-using-epic.
Accessed May 5, 2021.
176. Koehle H. Trans inclusive health records. 2020. https://hankoehle.com/
2020/08/06/trans-care-begins-at-the-software/Accessed October 2,
2020.
177. Kapusta SJ. Misgendering and its moral contestability. Hypatia 2016; 31
(3): 502–19.
178. @morganastra. pronoun.is. 2019. https://github.com/witch-house/pro-
noun.is. Accessed August 10, 2021.
179. Kronk CA, Dexheimer JW. Creation and evaluation of the Gender, Sex,
and Sexual Orientation (GSSO) Ontology. Pediatrics 2021; 147 (3 Meet-
ing Abstract): 602–3.
12 Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021

180. Personal pronouns - reported. 2018. https://loinc.org/90778-2/. Accessed
January 21, 2021.
181. Cassian. Gender Census 2020: Worldwide Report. 2020. https://gender-
census.com/results/2020-worldwide/. Accessed January 22, 2021.
182. Cassian. Gender Census 2021: Worldwide Report. 2021. https://gender-
census.com/results/2021-worldwide/. Accessed May 5, 2021.
183. Thompson HM. Patient perspectives on gender identity data collection
in electronic health records: an analysis of disclosure, privacy, and access
to care. Transgend Health 2016; 1 (1): 205–15.
184. Dunne MJ, Raynor LA, Cottrell EK, et al. Interviews with patients and
providers on transgender and gender nonconforming health data collec-
tion in the electronic health record. Transgend Health 2017; 2 (1): 1–7.
185. Blosnich JR, Cashy J, Gordon AJ, et al. Using clinician text notes in elec-
tronic medical record data to validate transgender-related diagnosis
codes. J Am Med Inform Assoc 2018; 25 (7): 905–8.
186. Goldenberg T, Reisner SL, Harper GW, et al. State-level transgender-
specific policies, race/ethnicity, and use of medical gender affirmation
services among transgender and other gender-diverse people in the
United States. Milbank Q 2020; 98 (3): 802–46.
187. Lopez CM, Solomon D, Boulware SD, et al. Trends in the use of puberty
blockers among transgender children in the United States. J Pediatr
Endocrinol Metab 2018; 31 (6): 665–70.
188. Kattari SK, Bakko M, Hecht HK, et al. Intersecting experiences of
healthcare denials among transgender and nonbinary patients. Am J Prev
Med 2020; 58 (4): 506–13.
189. Badgett MVL, Choi SK, Wilson BDM. LGBT Poverty in the United
States: A Study of Differences between Sexual Orientation and Gender
Identity Groups. Los Angeles, CA: Williams Institute; 2019. https://wil-
liamsinstitute.law.ucla.edu/wp-content/uploads/National-LGBT-Pov-
erty-Oct-2019.pdf. Accessed April 26, 2021.
190. Dinno A. Homicide rates of transgender individuals in the United States:
2010–2014. Am J Public Health 2017; 107 (9): 1441–7.
191. Masters RK, Hummer RA, Powers DA, et al. Long-term trends in adult
mortality for U.S. Blacks and Whites: an examination of period- and
cohort-based changes. Demography 2014; 51 (6): 2047–73.
192. Tate CC, Ledbetter JN, Youssef CP. A two-question method for assess-
ing gender categories in the social and medical sciences. J Sex Res 2013;
50 (8): 767–76.
193. Ashley F. Recommendations for institutional and governmental manage-
ment of gender information. N Y Univ Rev Law Soc Change 2019; 44:
489–528.
194. Institute of Medicine (US) Board on the Health of Select Populations. De-
veloping and implementing questions for collecting data on sexual orien-
tation and gender identity. In: Collecting Sexual Orientation and Gender
Identity Data in Electronic Health Records: Workshop Summary. Wash-
ington, DC: National Academies Press; 2013. https://www.ncbi.nlm.nih.
gov/books/NBK154073/. Accessed May 4, 2021.
195. Deutsch MB, ed. Guidelines for the primary and gender-affirming care of
transgender and gender nonbinary people. 2016. https://transcare.ucsf.
edu/guidelines. Accessed February 8, 2021.
196. Sittig DF, Singh H. Defining health information technology-related
errors: new developments since to err is human. Arch Intern Med 2011;
171 (14): 1281–4.
197. Tordoff DM, Morgan J, Dombrowski JC, et al. Increased ascertainment
of transgender and non-binary patients using a 2-step versus 1-step gen-
der identity intake question in an STD clinic setting. Sex Trans Dis 2019;
46 (4): 254–9.
198. Reisner SL, Conron KJ, Tardiff LA, et al. Monitoring the health of trans-
gender and other gender minority populations: validity of natal sex and
gender identity survey items in a U.S. national cohort of young adults.
BMC Public Health 2014; 14 (1): 1224.
199. Lombardi E, Banik S. The utility of the two-step gender measure within
trans and cis populations. Sex Res Soc Policy 2016; 13 (3): 288–96.
200. Cahill S, Singal R, Grasso C, et al. Do ask, do tell: high levels of accept-
ability by patients of routine collection of sexual orientation and gender
identity data in four diverse American Community Health Centers. PLoS
One 2014; 9 (9): e107104.
201. Deutsch MB. Creating a safe and welcoming clinic environment. 2016.
https://transcare.ucsf.edu/guidelines/clinic-environment. Accessed May
3, 2021.
202. Johnson AEW, Pollard TJ, Shen L, et al. MIMIC-III, a freely accessible
critical care database. Sci Data 2016; 3: 160035.
203. The patients table. http://web.archive.org/web/20190616145004/https://
mimic.physionet.org/mimictables/patients/. Accessed January 5, 2021.
204. Kronk C. Gender, sex, and sexual orientation in medicine: a linguistic
analysis [doctoral dissertation]. 2021. http://rave.ohiolink.edu/etdc/
view?acc_num¼ucin1617107411106107. Accessed August 10, 2021.
205. Kronk CA, Dexheimer JW. Creation and evaluation of the Gender, Sex,
and Sexual Orientation (GSSO) Ontology. Pediatrics 2021; 147:
602–3.
206. Kronk C, Tran GQ, Wu DTY. Creating a Queer Ontology: The Gender,
Sex, and Sexual Orientation (GSSO) Ontology. Stud Health Technol In-
form 2019; 264: 208–12.
207. Kronk CA, Wu DTY. Mapping and visualizing demographic informa-
tion in structured and unstructured clinical data. 2018. https://www.vis-
ualanalyticshealthcare.org/VAHC2018/slides/VAHC_2018_design_3.
pdf. Accessed July 23, 2020.
208. Agron RT, Gale S, Neavins TM, et al. Evaluation of healthcare for trans-
gender veterans. Endocr Metab Sci 2021; 2: 100072.
209. Lapinski J, Covas T, Perkins JM, et al. Best practices in transgender
health. Prim Care 2018; 45 (4): 687–703.
210. Lau F, Antonio M, Davison K, et al. A rapid review of gender, sex, and
sexual orientation documentation in electronic health records. J Am Med
Inform Assoc 2020; 27 (11): 1774–83. doi:10.1093/jamia/ocaa158
211. Moscoe GB. Beyond the Binary: A Proposal for Uniform Standards for
Gender Identity and More Descriptive Sex Classifications in Electronic
Health Records [master’s thesis]. Portland, Oregon, Oregon Health and
Science University School of Medicine; 2014.
212. Freeman L, L
opez SA. Sex categorization in medical contexts: a caution-
ary tale. Kennedy Inst Ethics J 2018; 28 (3): 243–80.
213. Patient self-identification. https://www.thehrcfoundation.org/profes-
sional-resources/patient-self-identification. Accessed May 5, 2021.
214. Anderson WJ, Kolin DL, Neville G, et al. Prostatic metaplasia of the va-
gina and uterine cervix: an androgen-associated glandular lesion of sur-
face squamous epithelium. Am J Surg Pathol 2020; 44 (8): 1040–9.
215. de Blok CJM, Wiepjes CM, Nota NM, et al. Breast cancer risk in trans-
gender people receiving hormone treatment: nationwide cohort study in
the Netherlands. BMJ 2019; 365: l1652.doi:10.1136/bmj.l1652
216. Kopetti C, Schaffer C, Zaman K, et al. Invasive breast cancer in a trans
man after bilateral mastectomy: case report and literature review. Clin
Breast Cancer 2021; 21 (3): e154–7.doi:10.1016/j.clbc.2020.10.005
217. Eismann J, Heng YJ, Fleischmann-Rose K, et al. Interdisciplinary man-
agement of transgender individuals at risk for breast cancer: case reports
and review of the literature. Clin Breast Cancer 2019; 19 (1): e12–9.
218. Chen W, Cylinder I, Najafian A, et al. An option for shaft-only gender-
affirming phalloplasty: vaginal preservation and vulvoscrotoplasty. A
technical description. Plast Reconstr Surg 2021; 147 (2): 480–3.
219. Lindahl H. 9 young people on how they found out they are intersex.
Teen Vogue. 2019. https://www.teenvogue.com/gallery/young-people-
on-how-they-found-out-they-are-intersex. Accessed May 5, 2021.
220. “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries
on Intersex Children in the US. 2017. https://www.hrw.org/report/2017/
07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-inter-
sex-children-us. Accessed February 10, 2021.
221. Kirkland F. Intersex patients “routinely lied to by doctors.” BBC. 2017.
https://www.bbc.com/news/health-39979186. Accessed February 10,
2021.
222. Carpenter M. The “normalization” of intersex bodies and “othering” of
intersex identities in Australia. J Bioeth Inq 2018; 15 (4): 487–95.
223. Al Shamsi H, Almutairi AG, Al Mashrafi S, et al. Implications of lan-
guage barriers for healthcare: a systematic review. Oman Med J 2020;
35 (2): e122–.
224. Partida, Y. Language barriers and the patient encounter. AMA J Ethics
2007; 9: 566–71.
Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0 13
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021

225. Meuter RFI, Gallois C, Segalowitz NS, et al. Overcoming language bar-
riers in healthcare: a protocol for investigating safe and effective commu-
nication when patients or clinicians use a second language. BMC Health
Serv Res 2015; 15: 371.
226. Sampson B, McGuire A. Genetics and the molecular autopsy. In: Patho-
biology of Human Disease. New York, NY: Elsevier; 2014: 3459–67.
doi:10.1016/B978-0-12-386456-7.06707-1
227. Wapner RJ, Martin CL, Levy B, et al. Chromosomal microarray versus
karyotyping for prenatal diagnosis. N Engl J Med 2012; 367 (23):
2175–84.
228. Fu F, Li R, Li Y, et al. Whole exome sequencing as a diagnostic adjunct
to clinical testing in fetuses with structural abnormalities. Ultrasound
Obstet Gynecol 2018; 51 (4): 493–502.
229. Patt erson G. Entertaining a healthy cispicion of the ally i ndus-
trial complex in transgender studies. Women L ang 2018; 41:
146–51.
230. Barsczewski J. Shutting up: cis accountability in trans writing studies re-
search. Peitho 2020; 22(4).
231. Keyes O, Austin J, Zimmer M. Autobiography of an audit: tracing the
roots and repercussions of the HRT-transgender database. AoIR Sel Pap
Internet Res 2020; (2020): 11249.
232. Guthman Eartha M. “Maybe Leaves Shake the Wind?”: Gliske 2019,
Transgender Health Research, and Inclusion in the Academy. https://
year2020.iscientist.de/wp-content/uploads/speaker_slides/Mae_Guth-
man_iS_gliske2019.pdf. Accessed May 6, 2021.
233. Retraction: Gliske, A New Theory of Gender Dysphoria Incorporating
the Distress, Social Behavioral, and Body-Ownership Networks. eNeuro
2020; 7: ENEURO.0149-20.2020. doi:10.1523/ENEURO.0149-
20.2020.
234. Dear neuroscience: stop trying to “fix” diversity. 2020. https://hpsns.hy-
potheses.org/1050. Accessed May 6, 2021.
235. Wiggers K. “Fundamentally flawed” study describes facial recognition
system designed to identify non-binary people. 2020. https://venture-
beat.com/2020/07/14/study-describes-facial-recognition-system-
designed-to-identify-non-binary-people/. Accessed May 6, 2021.
236. Lopez G. The catastrophically bad New York Times, op ed on transgen-
der research, debunked. Vox. 2015. https://www.vox.com/2015/8/24/
9197789/new-york-times-transgender-researchAccessed May 6, 2021.
237. Swartz A. “Are you really trans?”: The Problem with Trans Brain Sci-
ence. IJFAB Blog. 2018. http://www.ijfab.org/blog/2018/07/3694/.
Accessed May 6, 2021.
238. Ashley F. A critical commentary on ‘rapid-onset gender dysphoria’.
Sociol Rev 2020; 68 (4): 779–99.
239. Retract hate, end gender conversion therapy. https://www.retracthate.
com/. Accessed May 6, 2021.
240. Leland W. Make no mistake: a call for the official retraction of Rekers &
Lovaas (1974). https://www.change.org/p/dr-linda-leblanc-and-the-society-
for-the-experimental -analysi s-of-behavior-make-no-mistake-a-call-for-the-of-
ficial-retraction-of-rekers-lovaas-1974?signed¼true. Accessed May 6, 2021.
241. Eckhert E. A case for the demedicalization of Queer bodies. Yale J Biol
Med 2016; 89 (2): 239–46.
242. Dismantling A Culture of Violence: Understanding Anti-Transgender Vi-
olence and Ending the Crisis. https://assets2.hrc.org/files/assets/resour-
ces/2018AntiTransViolenceReportSHORTENED.pdf. Accessed January
5, 2021.
243. Lev AI. Gender dysphoria: two steps forward, one step back. Clin Soc
Work J 2013; 41 (3): 288–96.
244. Daley A, Mul
e NJ. LGBTQs and the DSM-5: a critical queer response. J
Homosex 2014; 61 (9): 1288–312.
245. Namaste V. Undoing theory: the “Transgender Question” and the epi-
stemic violence of Anglo-American Feminist Theory. Hypatia 2008; 24
(3): 11–32.
14 Journal of the American Medical Informatics Association, 2021, Vol. 0, No. 0
Downloaded from https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab136/6364772 by Yale University user on 07 September 2021