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5
Developing and Implementing
Questions for Collecting Data on
1
Sexual Orientation and Gender Identity
Key Points Raised by the Individual Speakers
• To address limitations in the way gender identity is represented in EHRs, a
two-question approach may provide more accurate information while affording
more respect to transgender people.
• Experience from surveys shows that it is feasible to collect accurate information
about sexual identity and behavior in a diverse population.
• EHR users and vendors are working together to address issues relating to
data collection on sexual orientation and gender identity in order to develop
standardized questions that best serve the needs of patients.
“In a perfect world,” said panel moderator Nancy Bates, of the ensus
C
Bureau, “we wish we had some tested, generally accepted, embedded set
of standard questions for gender identity and sexual orientation that
worked in all different settings and for all populations. We aren’t there
yet.” However, researchers are working toward that perfect world, and
1 This section is based on the presentations of JoAnne Keatley, Director, Center for Excel
lence for Transgender Health, University of California, San Francisco; Kristen Miller,
D
irector, Question Design Research Laboratory, National Center for Health Statistics; David
Grant, Director, California Health Interview Survey; Edward Callahan, Professor of amily
F
and Community Medicine, University of California, Davis, Health System; and Denise
R
asmussen, Epic Systems Corporation.
39
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40 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
workshop participants heard from several of those who have expertise
in this area and who conveyed some of the lessons they have learned in
survey settings and other settings. In this chapter, five speakers discuss
efforts to design questions for collecting data on sexual orientation and
gender identity.
GENDER IDENTITY DATA COLLECTION
A working definition of the word transgender, said JoAnne Keatley,
is a person whose gender identity or gender expression differs from the
sex assigned to them at birth. She reiterated a comment made earlier in
the workshop that many transgender people do not like to self-identify
as transgender, instead wanting to have their affirmed gender recognized
without it being connected to their transgender history. She also pointed
out the distinction between gender identity—an internal sense of self
regarding gender—and sexual orientation, which is a feeling of sexual or
romantic attraction to gender or gender expression of other individuals
and is not necessarily linked to anatomy. This distinction can cause con-
fusion in health surveys, an example being the case of a man who is in a
relationship with a transgender woman often being categorized as a man
who has sex with a man when in fact that may not be the perception of
that particular individual. In fact, there is a history of the CDC capturing
transgender individuals and their partners under the men who have sex
with men category.
In Keatley’s opinion, EHRs currently have limitations in the way they
represent gender identity. If a transgender person’s sex is listed in terms
of anatomy and the only mention of that person’s transgender status is
in a provider note, other providers may not go to the notes section of the
EHR and the result can be a disconnect that impacts the patient. Another
limitation concerns denial of care from insurance coding that has to be
gender-specific—if a transgender female is identified as female on an
EHR, they may be denied prostate screening. To address these limita-
tions, the Center of Excellence for Transgender Health recommends that
transgender-inclusive data be collected using two questions. First, ask
about the person’s current gender identity, and then ask for the person’s
assigned sex at birth. Asking about current gender identity first honors
the patient’s gender expression by allowing the patient to self-identify in
their current gender identity. It may be necessary to ask additional ques-
tions to specify current anatomy, but that can be done through drop-down
menus or through provider questions.
Regarding implementation, the first step is to update the health care
system’s data collection forms and databases to include the two-question
system. The CDC, Keatley noted, implemented the two-question system
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DEVELOPING AND IMPLEMENTING QUESTIONS 41
in 2011 in its adult HIV case report form and its Enhanced HIV/AIDS
Reporting System. She added that CDC data collected using the two-
question system registered a 64 percent increase in transgender people
compared to just asking current gender identity without asking about
sex assigned at birth.
The next step in implementation is to train all staff and health care
professionals to ask questions about gender identity correctly and consis-
tently. Then, it is important to educate funders, health departments, and
government agencies about the need to aggregate and disseminate the
collected data. Only through data aggregation and dissemination will it
be possible to determine the size of the transgender population and iden-
tify specific health risks and health care needs of transgender people. The
last step is to use the disseminated data to improve services and programs
for transgender people.
DEVELOPING A “PERFECT” SEXUAL IDENTITY MEASURE
Developing the sexual identity question for the National Health Inter-
view Survey (NHIS) involved multiple steps that Kristen Miller described,
starting with settling on what exactly the survey needed to measure.
Sexual orientation, she said, is not a measurable concept, but rather is a
generic catch-all term that describes an essence of how an individual feels.
Instead, sexual orientation is an amalgam of three other concepts: sexual
behavior, sexual attraction, and sexual identity.
Sexual behavior looks at actual same-sex versus opposite-sex sexual
behavior and is not necessarily consistent with self-conception or pre-
sentation of self. One problem in designing a question to quantify sexual
behavior is that definitions of what counts as “sex” vary across sub-
groups. Sexual attraction refers to same sex versus opposite sex or gender
desire, and it, too, is not necessarily consistent with self-conception or
presentation of self. Sexual attraction is a latent and elusive phenomenon
that is neither tangible nor observable. Miller said that the problem with
designing a question to quantify sexual attraction is that there are differ-
ent variations in what people think of as sexual attraction. Sexual identity
describes an individual’s conscious identification of an understanding of
self, and in that respect, is similar to racial identity because it represents
the individual’s relationship to their social world. Sexual identity is a
complex phenomenon that may fluctuate.
The key to designing questions around these three concepts is to not
conflate them, Miller stated, adding that the term “sexual orientation”
should be eliminated when used with scientific data because it does not
reflect the realities of people’s lives. This is particularly true, she added,
for women, and in her mind, the use of the term “sexual orientation” does
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42 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
a disservice to the LGBT community. She also noted that in designing
questions, it is important to consider whether the questions will be asked
in a provider’s office or by a field survey interviewer.
Over the past decade, the National Center for Health Statistics (NCHS)
has used a number of different questions to collect data on sexual identity
in a variety of surveys, and the data are inconsistent across these surveys.
The result, said Miller, is a distorted picture of what is happening within
the lesbian, gay, and bisexual community. In a 2002 survey that used the
terms heterosexual, homosexual, and bisexual to refer to sexual orienta-
tion, lesbians were identified as the most obese group of sexual minorities.
In contrast, a 2006 survey that used the terms “straight or heterosexual,”
“gay or lesbian or homosexual,” and “bisexual” found that lesbians were
the least obese group.
To develop the sexual identity questions for the NHIS, Miller and her
colleagues conducted seven cognitive tests involving 377 cognitive inter-
views. They also conducted a number of quantitative studies and exam-
ined a variety of different surveys that used some variation of a sexual
identity question. These studies showed that LGBT people answer ques-
tions from a different perspective than non–sexual minority individuals,
and that this difference stems in large part from the fact that non–sexual
minority people are unfamiliar with the terms used in the questions.
Based on these findings, the NCHS revised the questions designed for
the NHIS based on three principles. First, use labels that respondents use
to refer to themselves. Second, do not use labels that respondents do not
understand. Third, use follow-up questions to meaningfully categorize
“something else” and “don’t know” answers. Following these principles,
the NCHS developed the sexual identity questions listed in Box 5-1.
She noted that though the second question includes a transgender
option, this is not meant to be a transgender question. Rather, it is meant
to address the complex relationship between gender and sexual identity.
In closing, Miller said that this set of questions successfully categorized
all but a few respondents, and that these questions will be included in
the next NHIS.
ASSESSING SEXUAL IDENTITY AND BEHAVIOR
IN CALIFORNIA’S DIVERSE POPULATION
The California Health Information Survey (CHIS) is an omnibus,
multilingual, public health telephone survey of 42,000 to 56,000 Califor-
nia households conducted biannually since 2001 and continuously since
2011. CHIS has included sexual identity questions since 2001 and gender
of sexual partner questions since 2003. The questionnaire development
process, explained David Grant, involves multiple stakeholders organized
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DEVELOPING AND IMPLEMENTING QUESTIONS 43
BOX 5-1
NCHS Sexual Identity Questions
Do you think of yourself as…?
❏ Lesbian or gay
❏ Straight, that is, not gay
❏ Bisexual
❏ Something else
❏ Don’t know
By Something Else, do you mean that…?
❏ You are not straight, but identify with another label such as queer, trisexual,
omnisexual, or pan-sexual
❏ You are transgender or transsexual
❏ You have not or are in the process of figuring out your sexuality
❏ You do not think of yourself as having a sexuality
❏ You personally reject all labels of yourself
❏ You made a mistake and did not mean to pick this answer
❏ You mean something else
What do you mean by something else? __________________________
By Don’t Know, do you mean that…?
❏ You don’t understand the words
❏ You understand the words, but you have not or are in the process of figuring
out your sexuality
❏ You mean something else
What do you mean by something else? __________________________
SOURCE: Miller presentation.
into an advisory board, technical advisory committees, and both ad hoc
and topic-specific workgroups. The general rule with CHIS is to never
write new questions but to use questions from other well-established
surveys. One caveat is that questions designed for data collection using
registration forms or patient portals can be difficult to use in a phone
survey, so questions are often adapted for that particularly medium, as
well as to account for the linguistic diversity in California. Extensive
testing and training and ongoing monthly monitoring of live interviews
completes the process.
In the first CHIS cycle in 2001, the survey asked two sexual identity
questions of adults under age 65. The first was a yes-or-no question: Are
you gay, lesbian, or bisexual? The word lesbian was omitted if the respon-
dent was male. If yes, the second question clarified the answer to the first
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44 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
question. There was a concern that there would be a significant hang-up
rate with these questions, but, in fact, these questions posed no more of
a problem than other questions in the survey. An issue that did arise was
that respondents would often answer the first question by stating their
sexual identity, which created problems for the interviewers and slowed
down the interview process. An analysis of the 2001 survey data high-
lighted the need for sexual behavior questions, and these were added in
2003. Beginning in 2003, they have asked a single sexual identity question
that reads, “Do you think of yourself as straight or heterosexual; as gay,
lesbian, or homosexual; or bisexual?” There is also the option of opening
a text box and inputting an answer verbatim. In addition, there are two
questions on sexual behavior. In cycles since 2003, these questions have
been only asked of adults under the age of 70 because of a high rate of
misclassification concerning the word “bisexual” in adults over age 70.
Discussing data from CHIS 2009, Grant noted that about 3 percent
of men reported that they had exclusively male sex partners in the pre-
ceding 12 months, and about 1.6 percent of women reported having
exclusively female sex partners in the preceding 12 months. Less than
0.5 percent of both men and women reported having sex partners of both
sexes. From the sexual identity questions, about 2.5 percent of men iden-
tified as gay or homosexual, and 1.1 percent of women identified as gay,
lesbian, or homosexual. One percent of men and 1.7 percent of women
identified as being bisexual. Non-response to these questions was low,
about 2-3 percent. In contrast, 23 percent of the sample refused to answer
questions on household income. Non-response, which combines “don’t
know” and refusals, was highest among Cantonese and Spanish speakers.
Women who spoke Asian languages—Cantonese, Korean, Mandarin, and
V
ietnamese—were two to six times less likely to respond than men, which
Grant said was unexpected.
In summarizing the lessons learned from over a decade of surveys,
Grant said that it is clearly important to collect data on sexual identity in
EHRs. “Electronic health records have great potential, especially for trans-
gender populations because even in a large survey like CHIS, we’re likely
to pick up very few or too few to make much statistical inference about
that population,” he explained. He added that the CHIS results show that
it is feasible to collect relatively accurate information about sexual identity
and behavior in a diverse population, but that the wording of questions is
important, as is the setting in which the questions are asked.
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DEVELOPING AND IMPLEMENTING QUESTIONS 45
SEXUAL ORIENTATION AND GENDER IDENTITY IN THE
ELECTRONIC HEALTH RECORD:
A USER AND VENDOR PERSPECTIVE
The University of California, Davis (UC Davis) Health System began
collecting demographic data in its EHR in 2009. At the time it was felt by
the Health System’s EHR task force that it could not include sexual orien-
tation or gender identity information in the EHR. A subsequent decision
to appoint a new task force on inclusion of sexual orientation and gender
identity in the UC Davis Health System elicited opposition from some
administrators who felt that clinicians would not be comfortable discussing
this issue or that the topic was too sensitive to be discussed in the context
of an EHR. And even though this resistance was eventually vercome—
o
UC Davis was set to roll out its sexual orientation and ender identity
g
questions in November 2012—Callahan said this experience convinced
him that the only way that this information will be collected in EHRs on a
widespread basis is if the federal government requires it to happen.
The taskforce saw this opposition as an opportunity to make a com-
pelling case to both the clinical and LGBT communities for the need to
collect these data. In essence, said Callahan, the task force developed
a business case based on the premise that there are significant, even
devastating, health disparities that LGBT people experience because of
the de facto “Don’t Ask, Don’t Tell” attitude that pervades the medical
community. “If we can desensitize our providers to be able to talk about
sexual orientation and gender identity,” said Callahan, “they might learn
that LGBT people are part of us, not some group of ‘other.’” In fact, the
task force’s efforts, he said, are changing attitudes and the culture at UC
Davis. One tangible result of this attitude change is the development of
a new medical school curriculum that incorporates LGBT health issues
across the entire 4-year process.
One of the most compelling pieces of evidence for including sex-
ual orientation and gender identity data in EHRs, said Callahan, comes
from Caitlin Ryan and the Family Acceptance Project at the University of
C
alifornia, San Francisco. In a 2009 study, Ryan focused on young adult
LGBT people and looked at their self-reports of how much acceptance and
support they received from their families as they came out and the current
status of their health. For those who got little support, the adverse effects
were large: 8 times the amount of suicidal ideation, 8.4 times the amount
of suicide attempts, almost 6 times the amount of serious depression, and
significant increases in illegal drug use and unprotected sex. These data
point to the value of being able to identify these young adults and provide
them with necessary counseling and other health services.
For the past 3 years, Callahan and his collaborators at UC Davis have
been conducting Grand Rounds about LGBT health disparities and are
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46 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
in the process of rolling out some written educational materials for all of
the system’s providers. They are also surveying these providers to iden-
tify those who are willing to be listed as LGBT friendly. The UC Davis
Health System is going to use the MyChart patient portal feature of the
Epic2 EHR to provide a questionnaire that patients can answer in the pri-
vacy of their own home that includes questions about sexual orientation
and gender identity. It is also working with Epic to systematize where and
how questions on sexual orientation and gender identity are located in
the EHR. One idea is to tie the EHR to systematic prompts in response to
certain answers to these questions. For example, when someone identifies
as being transgender, the prompts would alert the care provider about
what organ systems need to be monitored, what kind of preventive care
needs to be presented, and how best they can be a good provider for that
person. Callahan noted that Epic appears willing to make these changes
to its EHR system.
In fact, said Denise Rasmussen, Epic is eager to receive input from
users as to how to collect information on sexual orientation and gender
identity in its EHR systems. Epic already has a field to capture informa-
tion on sexual partners and runs reports and triggers alerts based on the
sex of that partner. She noted, too, that at least some of the 260 organiza-
tions that use Epic have extended the sex category list to capture items
related to gender identity and sexual orientation.
What would be helpful to Epic as an EHR vendor, she said, is a more
standardized way to document information about sexual orientation and
gender identity and more direction on where each birth sex, legal gen-
der, and identified gender should be used in terms of billing, health
information exchanges, clinical decision support, and preparing materials
designed for patients. Epic is also concerned about who should document
this information and who should be allowed to see it. For example, while
it is obvious that the primary care physician should see this information,
should the patient’s chiropractor?
Regarding technical issues, Rasmussen said that Epic knows that it
needs to create a new field or fields to represent the sex of a patient in
a way that better captures birth sex, legal gender, and identified gender
and then display that information in appropriate places in the EHR. The
company is also interested in making alerts more meaningful, that it is
alerting the primary care physician to the issues that are appropriate to
the patient in front of them: telling a physician to order a prostate exam
for a female-to-male transgender patient is not helpful.
2 Epic is a company that makes software, including EHRs, for health providers and facili-
ties. They are one of several large commercial vendors.
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DEVELOPING AND IMPLEMENTING QUESTIONS 47
DISCUSSION
When asked by Jessica Xavier from HRSA why the NHIS includes
a question about gender identity rather than behavior, Miller answered
that the NHIS is a vehicle for collecting basic health data and including
questions about sexual behavior would not be appropriate in the sur-
vey. She added that the National Survey of Family Growth (NSFG) and
the National Health and Nutrition Examination Survey (NHANES) are
more appropriate enues for asking sexual behavior questions. Clinton
v
A
nderson of the American Psychological Association asked Miller about
the significance of the placement of the sexual identity and the sexual
behavior questions. Miller explained that the placement of questions is
important because respondents get cued in to certain topics. For example,
if a question focusing on reproduction is asked after a number of behav-
ioral uestions, a respondent may be cued up to provide a sexual behavior
q
answer. In contrast, asking the question as part of a demographic section
may cue respondents to indicate sexual identity rather than behavior.
Aaron Tax asked Grant if he had been able to identify questions that
worked better with older adults who do not always understand terms like
“bisexual” and Grant indicated that he hopes to add a question developed
by Miller and her colleagues to the CHIS in 2013 that would be easier for
older adults to understand. He added that moving away from the terms
heterosexual and homosexual may help better identify bisexual older
adults.
There was some discussion around the term “sexual orientation.”
While Miller asserted during her talk that the term is not a measurable
concept, Harvey Makadon pointed out that the term is commonplace and
any attempt to substitute “sexual identity” or another term for it would
be challenging. Miller responded that “sexual orientation” is a catchall
phrase and does not provide constructs around which scientific questions
can be developed. Makadon, however, said that he thought of orienta-
tion and identity as the same thing and questioned the need to abandon
“sexual orientation.”
In response to questions from Bates and John Knudsen, Keatley dis-
cussed the two-question approach. She explained that the CDC’s one-
question approach provided the following response options:
• male
• female
• transgender male to female
• transgender female to male
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48 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
The two-question model asks about current gender identity separate
from sex assigned at birth. She further explained that for the gender iden-
tity question, the suggested drop-down options are
• male
• female
• transgender woman
• transgender man
• gender queer
• open-ended
For the open-ended option, they ask people to specify so that they
capture those data. Gal Mayer, medical director at Callen-Lorde Com-
munity Health Center in New York, who was participating by phone,
e-mailed that at their community health center they do ask the sex at birth
and current gender identity questions, the two-step process that Keatley
discussed. However, they also ask sex listed on health insurance for bill-
ing purposes and that becomes the field for that particular purpose.
Leslie Calman noted that she was struck by the ambivalence that
continually is expressed about who needs to know these data. On the one
hand, she explained, we know that being a self-identified lesbian or gay
man creates all kinds of health issues from childhood that relates to stress
and discrimination. On the other hand, it is not clear who needs to know
this information. For example, does a chiropractor need to know? Perhaps
it is irrelevant. But maybe the patient’s back is out of whack because she is
a lesbian; not because she has sex with women, but because of the stresses
of being a lesbian. She noted that it has been a thread throughout the
entire day, and it presents a dilemma for patients. Rasmussen responded
that there was no clear answer. She theorized that it is a generational
divide, with younger people more open to sharing this information with
a wider range of care givers and older people being more hesitant to make
these data widely available. Callahan added that as the culture shifts, he
expects this will be less of a problem. Shane Snowdon responded to this
by saying that in her opinion it was not only older people who were hesi-
tant to disclose their sexual orientation, but younger people as well. She
noted that San Francisco is an LGBT-friendly city, but that her experience
working in a medical center there highlights that discrimination for sexual
and gender minorities exists.
In response to a question from Harvey Makadon about how Epic
is working with clients to coordinate efforts to develop a common
approach to collecting sexual orientation and gender identity data in
EHRs, asmussen explained that Epic had an LGBT breakout group at
R
its user group meeting in September 2012. This user group had 10 to 15
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DEVELOPING AND IMPLEMENTING QUESTIONS 49
organizations participating and there was a good exchange of information
about what each organization was doing and how Epic might approach
this problem until standards are developed. This is a work in progress,
she added, and this group plans to meet frequently to provide advice
to Epic. “As a vendor, we hate to push something out that is then going to
change. If we’ve pushed that out, all of the different organizations will be
collecting this information, and then potentially have to collect it again,”
she said.
Ignatius Bau asked if sexual orientation was a field that users have
customized and added to Epic products. Rasmussen said requests for
adding a field on sexual orientation had come up and that it was relatively
easy to do. She noted that the workflow around transgender documen-
tation was more complicated. In response to a question about vendors
working together around the issue of standards for EHRs, Rasmussen
replied that while a standard that all vendors could follow would be
ideal, what will likely happen is that each vendor will develop their own
standards and then work together to map fields from each other’s EHRs
so that they can exchange data accurately. This is the approach vendors
have used in the past.
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