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2
Clinical Rationale for Collecting
Sexual Orientation and
1
Gender Identity Data
Key Points Raised by the Speaker
• Health disparities among LGBT people are rooted in bias, stigma, discrimina-
tion, and social determinants of health, not genetics or other molecular issues.
• Discrimination against and substandard care for LGBT people is prevalent.
• Information about sexual orientation and gender identity is critical to addressng
i
issues of access to care and quality of care.
• Education of clinicians, health system staff, and patients is essential to mprove
i
the collection of information on sexual orientation and gender identity.
Harvey Makadon began his talk by recognizing the Surgeon General’s
report Healthy People 2020, which, for the first time, acknowledged that
health disparities exist in LGBT populations. Health disparities among
LGBT people are rooted in bias, stigma, discrimination, and social deter-
minants of health, not genetics or other molecular issues, or even sexual
orientation and gender identity, said Makadon. Therefore, he said, sys-
tems changes and educational changes can make a significant difference
1 This section is based on the presentations of Harvey Makadon, Clinical Professor of
Medicine at the Harvard Medical School and Director of the National LGBT Health Educa-
tion Center at The Fenway Institute; and Beverly Tillery, Director and Community Educator,
Lambda Legal.
5
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6 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
in the ability of the health care profession to provide quality, accessible
care for LGBT people. “That is an important theme that we need to keep
in mind,” said Makadon.
At one time, hospitals were taking the lead in eliminating health care
disparities among minority populations, but that role is now being shared
more equally by community health centers and a variety of enabling
organizations. Nonetheless, hospitals continue to be a key leader in this
area, and the American Hospital Association (AHA) has issued the Health
Research and Education Trust Disparities Toolkit for collecting race,
e
thnicity, and primary language information from patients. In issuing
this toolkit, the AHA noted that disparities in health care can be addressed
through a quality-of-care framework if data on race, ethnicity, and pri-
mary language are available. A 2003 report from Physicians for Human
Rights, The Right to Equal Treatment, reiterated this message when it stated
that data collection is not only central to quality assurance but also to help
ensure nondiscrimination in access to care.
Makadon said that by the same token, health disparities that affect
LGBT people will only be addressed if the health system collects data on
sexual orientation and gender identity. The IOM, in its report The Health
of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for
Better Understanding, noted the direct benefit of collecting data on sexual
orientation and gender identity for individual patients. Only by ask-
ing patients about their LGBT status and collecting data on the LGBT
population will it be possible to end LGBT invisibility in health care. As
Makadon put it, “I would say that unless we can do something about col-
lecting data on LGBT people, we can’t assure anyone that LGBT people
are receiving quality care.” He then asked the workshop audience to think
about the following questions:
• Has a clinician ever asked about your sexual history, including
behavior, health, and satisfaction?
• Has a clinician ever asked you about your sexual orientation?
• Has a clinician ever asked you about your gender identity?
Based on his experience, Makadon estimated that 10 to 20 percent
of people would answer yes to the first question, but that close to zero
would answer yes for the second and third questions. Given that there are
medical issues related to sexual orientation and gender identity, it seems
that it would be difficult to provide good medical care for LGBT people
without that information, and it is equally challenging to assess the qual-
ity of care being provided to the LGBT population. He also remarked
that the invisibility of the LGBT population results from a combination of
patient reluctance to divulge information on sexual orientation or gender
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CLINICAL RATIONALE 7
identity and physician discomfort or ignorance about the importance of
this information.
In terms of sexual orientation, Makadon continued, it is not simply a
matter of identifying someone as gay, lesbian, bisexual, or heterosexual.
Rather, he said, the real question is about how people see themselves,
how they actually behave, and what their desires are. Some people, for
example, are attracted to others of the same sex but have never acted on
that desire, yet they want to talk to their physicians about those thoughts.
“Unless you can get that information and engage people in conversation,
you are not going to help somebody who is thinking about whether or
not they may be gay or lesbian or bisexual, but hasn’t acted on it because
they don’t feel comfortable with it. So we have to be thinking about how
we get at this information,” Makadon explained.
To back up this assertion, he cited a 2006 study from the New York
Department of Mental Health that found 9.4 percent of men who identi-
fied as heterosexual had had sex with a man in the previous year. These
men were more likely to belong to minority racial and ethnic groups, be
of lower socioeconomic status, be foreign-born, and not use a condom. In
another study, between 77 and 91 percent of lesbians reported that they
had at least one prior sexual experience with men, and 8 percent reported
having sex with a man in the prior year. He added that while these exam-
ples might seem obvious to those attending the workshop, they are not
obvious to most nurses or doctors because they do not learn about this
kind of discordance between sexual identity and sexual behavior in medi-
cal school. Yet, for clinicians, it can be helpful to understand the different
dimensions and manifestations of sexual orientation in order to build a
better therapeutic relationship with their patients.
ACCESS TO CARE
According to the aforementioned IOM study, lesbians and bisexual
women may use preventive health services less frequently than hetero-
sexual women. From his experience as a clinician, Makadon said that he
expects that reduced access to care applies to gay men and transgender
people as well. What this reduced access to care translates into, he said,
is that LGBT people do not receive the right preventive health screening
that they need, and the only way to remedy that situation is to identify
these populations.
As an illustration of the importance of identifying LGBT people,
Makadon cited 2009 data from the Centers for Disease Control and Pre-
vention (CDC) that showed that 61 percent of new cases of HIV infection
were among men who have sex with men. This number, which has been
climbing annually since 2006, came as a surprise given that the number
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8 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
of HIV cases overall remained constant, and it likely reflects the fact that
prevention efforts are not reaching men who have sex with men but do
not identify as gay when asked on a survey. This is particularly true
among black men between the ages of 13 and 29 who have sex with men,
a population in which there has been an almost 50 percent increase in the
incidence of HIV cases between 2006 and 2009.
These data highlight the fact that LGBT people are not one homoge-
neous group, but rather that they reflect the same cultural diversity seen
throughout the general population. Understanding the cultural diversity
among, in this case, men who have sex with men, is going to be key
to developing ways to reach underserved populations, but that lesson
applies to all LGBT people, said Makadon. That understanding cannot
start without data about these underserved populations.
In terms of understanding the T in LGBT, the IOM report noted that
there are significant health disparities that have been documented among
transgender people. It is critical that clinicians have information on a
patient’s gender identity, gender expression, birth sex, medical history,
and current anatomy. The only way to get this information is by educating
both clinicians and the transgender community about the importance of
discussing these issues to ensure access to high-quality care. The clinician,
said Makadon, has to be the point person in gathering this information,
but the field needs to figure out ways to help clinicians so that they do
not spend all of their time just gathering data and not having time to talk
to their patients.
THE IMPACT ON QUALITY OF CARE
To illustrate the importance of all clinicians, not just the primary
care physician, having information about a patient’s gender identity,
M
akadon discussed two case studies. The first case involved a 50-year-
old woman who developed a high fever and chills after head and neck
surgery. The infection source turned out to be the patient’s prostate gland,
which nobody knew she had because nobody had asked about her gender
identity and she had not volunteered this information. She could have
received much quicker treatment for her infection had her surgeon and
the hospital staff known she was a transgender woman.
The second case involved a 55-year-old man who came to his physician
with pain and on X-ray appeared to have metastases from an unknown pri-
mary cancer. Evaluation ultimately showed that he had developed ancer
c
in his residual breast tissue that remained after having “top urgery” to
s
remove his breasts. None of his physicians were aware that he was a trans-
gender man, so he had not been advised to have routine breast screening
even though his mother and sister had also had breast cancer.
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CLINICAL RATIONALE 9
Makadon then discussed some of the new opportunities that exist for
gathering patient information on sexual orientation and gender identity
that take advantage of patient portals that many health care systems have
now installed (Figure 2-1). These portals are designed to enable patients to
input information about themselves in the privacy of their homes, which
could be particularly important for LGBT people. Another approach that
some health care systems are testing is to use iPads handed out at the
registration desk to enable patients’ to enter data in private, rather than
as verbal answers to what can be embarrassing or awkward questions.
That information can then become part of the electronic record that all
of an individual’s clinicians would have access to without the need to
question the patient.
In closing, Makadon said that there are a few issues that need to be
considered in preparation for collecting LGBT data in clinical settings.
Clinicians, he said, need to learn about LGBT health issues and the range
of expression related to identity, behavior, and desire. Health care system
staff members also need to understand these concepts given that patients
often report that uncomfortable questions come up at the reception desk,
not in the exam room. Patients, too, need to learn about why it is impor-
tant to communicate this information and to feel comfortable that it will
be used appropriately. Finally, collecting data on sexual orientation and
gender identity is critical and has to be done sensitively, without assump-
tions, and for every patient along with all other demographic data. “Our
task is to improve quality and access to care for all, including LGBT
people, and that starts with more data collection,” said Makadon.
SUPPORTING PATIENTS IN THE COLLECTION OF DATA
In 2009, Lambda Legal, together with more than 100 partner organi-
zations, surveyed 4,916 people representing a diverse sampling of LGBT
communities and people living with HIV, regardless of sexual orienta-
tion, gender identity, HIV status, race, ethnicity, age, and geography. The
resulting report, When Health Care Isn’t Caring: Lambda Legal’s Survey on
Discrimination Against LGBT People and People Living with HIV, was the
first to document refusal of care and barriers to health care among LGBT
and HIV communities on a national scale, said Beverly Tillery. She added
that the findings were surprisingly high in terms of discrimination and
substandard care. For example, 56 percent of lesbian, gay, or bisexual
individuals and 70 percent of transgender people said that they had expe-
rienced discrimination or received substandard care. Nearly 8 percent
of lesbian, gay, or bisexual people and almost 27 percent of transgender
people reported being refused needed health care. More than 10 percent of
lesbian, gay, or bisexual people and more than 15 percent of transgender
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10
FIGURE 2-1 New opportunities for gathering LGBT data during the process of care.
NOTE: EHR = electronic health record.
SOURCE: Makadon presentation.
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CLINICAL RATIONALE 11
people reported having had the experience of a health care professional
who refused to touch them or used excessive precautions before touching
them. Almost 11 percent of lesbian, gay, or bisexual people and almost
21 percent of transgender people said that they had experienced a health
care professional use harsh or abusive language with them and 4 percent
of lesbian, gay, or bisexual people and almost 8 percent of transgender
people described receiving physically rough or abusive treatment from
a health care professional. In nearly every case, people of color and low-
income people had higher rates of experiencing discrimination.
In terms of barriers to care, the survey found that significant percent-
ages of LGBT individuals expressed concerns about accessing health care.
Nine percent of lesbian, gay, or bisexual people and almost 52 percent
of transgender people feared they would be refused medical service;
more than 28 percent of lesbian, gay, or bisexual people and 73 percent
of transgender people expressed concern that medical personnel would
treat them differently than non-LGBT people; 49 percent of lesbian, gay,
or bisexual people and almost 90 percent of transgender people said
there were not enough health professionals who were adequately trained
to care for them because of their sexual orientation or gender identity
status; more than 24 percent lesbian, gay, or bisexual people and more
than 50 percent of transgender people said there were not enough sup-
port groups; and almost 29 percent of lesbian, gay, or bisexual people and
almost 59 percent of transgender people said there were not enough sub-
stance abuse programs for LGBT individuals. Again, the numbers were
all higher in people of color.
As part of this project, Lambda Legal and its partners also collected 50
personal stories that provided real-life illustrations of the discrimination
and substandard care LGBT people experience. Among the stories that
Tillery recounted were
• Jodi from Atlanta, who had to seek emergency room care. “The
nurse comes into the room to get my information. Among her list
of questions was whether I was single or married. Well, I had a
union that was not recognized in Georgia, but it would not have
been accurate to answer either single or married. The nurse wanted
an emergency contact and wanted to know if there was anyone
with me, and if so, what was their relationship to me. I panicked
for a minute.
“I was scared to admit my life partner was in the waiting room.
I was mortified to say I was single. My head was swimming try-
ing to think of a lie about who my partner was. Should I be safe
and say she was a friend? If so, she would be denied visitation if
something went wrong. Should I lie and say she was my sister?
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12 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
How humiliating. I was afraid that if I admitted to being gay with
a partner that I might get sub-par care and even have my care and
life sabotaged.
“After delaying, I felt I would take the risk and say that my
relationship does not fit into one of the boxes on your form. When
the nurse looked confused, I confessed that I was gay and that my
life partner was in the waiting room. She looked confused again,
and after a pause, said, ‘Uh, oh, huh, never heard that before.’
L
uckily, that is the worst that happened, but no one should have
to go through even that much.”
• Joe from Minneapolis. “I was 36 years old at the time of this story
and an out gay man. I was depressed over the breakup of an 8-year
relationship. The doctor I went to see told me that it was not medi-
cine I needed, but to leave my dirty lifestyle.”
• Emile in Boise. “I’m a post-operative trans woman who began my
gender transition in 2004. After talking about transitioning with
my family M.D., she agreed to continue her medical relationship
with me. Because she was not experienced with treating a trans
person or prescribing hormone replacement therapy, she referred
me to a local endocrinologist. When I called to set up an appoint-
ment, I was told by the secretary, we don’t treat people like you.
I called two other local endocrinologists and was told the exact
same thing.”
• Tory from Portland. “I went to visit my school’s health clinic for
an annual check-up. While I was filling out my health history
information sheet, I was pleasantly surprised to find that the sheet
indicated both male and female partners, the number of partners,
and the type of birth control I used. I thought this was a great
example of LGBT-friendly medical facilities. Unfortunately, when I
was called into the exam room, the nurse didn’t read the form and
proceeded to ask me if I was sexually active and used condoms.
“When I replied no and told the nurse that I was a lesbian, she
was shocked. After that, the appointment was awkward, and I felt
as though the nurse was not willing to touch me because I was a
lesbian. The entire awkward conversation and exam could have
been avoided if the nurse had only read the information sheet she
was given. It just goes to show you that having an LGBT-friendly
question form does not make a clinic LGBT-friendly.”
• Lee from Lock Haven, Pennsylvania. “Fortunately, my primary
care physician is awesome. She takes good care of me and has since
I was 15 years old. I am able to completely be out and honest with
her. Although we may not always agree on non-treatment-related
topics, she is fair and non-judgmental. Unfortunately, I have been
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CLINICAL RATIONALE 13
subjected to ignorance by specialists, female gynecological special-
ists, and one male plastic surgeon.
“One simply refused to believe that I was not sexually active
with men and refused to believe that I did have sex with women.
Others struggle with my identity. I identify primarily as male, but
I still have to cope with having a female body and keep it healthy.
I’m blessed to be healthy these days. I have never been evasive
about my person, and I have found that when I’m able to openly
discuss my body and my life, I am able to make informed, rational,
and essential decisions about my health.”
In closing, Tillery emphasized the critical need to gather information
in order to identify health care disparities in LGBT communities. It is clear
from the data that Lambda Legal collected, she said, that LGBT people
experience real discrimination and a significant level of it, which makes
them cautious about getting the health care they need. It is also impor-
tant, she added, to focus on confidentiality and privacy because privacy
breaches can have repercussions that go far beyond health care. In many
states, she reminded the audience, it is still legal to be fired for being
LGBT. She recommended that data collection be optional with a sense of
informed consent that involves educating patients about why these data
are important, and how and when they will be used.
DISCUSSION
During the discussion session, Makadon was asked if the Centers for
Medicare & Medicaid Services (CMS) or electronic health record system
vendors were working on developing requirements and standards for
the collection of this information. Robert Tagalicod, from CMS, answered
that both his agency and the Office of the National Coordinator for Health
Information Technology (ONC) are working closely with the vendor com-
munity to develop certification standards. Makadon said that from his
understanding, the issues are not technical ones but involve defining the
questions that need to be asked and structuring those questions appropri-
ately. As an example, he said that while it is important to ask about gender
identity, it is equally important to ask birth sex in order to have accurate
information about a patient’s anatomy.
It is also important, he added, to think about these questions in a
way that works for transgender people but also for everyone else so that
everyone feels comfortable that these are routine questions that are being
asked because they are important for the health care of a significant num-
ber of individuals. He recounted the furor that arose when Massachusetts
instituted a requirement to collect data on race and ethnicity because most
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14 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
people did not understand the need for this information. Now, the public
understands, for example, that untreated high blood pressure is more
prevalent in the African American community.
Leslie Calman, of the Mautner Project: The National Lesbian Health
Organization, asked if Makadon had any insights into how to communi-
cate these issues to her community. She noted that she regularly encoun-
ters lesbians, particularly older lesbians, who are terrified of having this
information available and are particularly terrified that they will find
themselves in a situation where they have an accident, go to the hospital,
and receive poor care because they are lesbians. Makadon agreed that this
fear is real in the LGBT community, particularly among older individuals.
In a final comment, Jesse Ehrenfeld, from Vanderbilt University, noted
that a prospective clinical trial that he and his colleagues recently finished
showed that patients are more honest about their personal information
when they provided it at home.
