Lessons from the Voices of Patients
In a recent interview, Vita—who identifies as Black, trans, nonbinary, mentally disabled, pansexual, demisexual, and femme—powerfully highlighted how living in a world that is structured against her has harmed her health.
One of the ways I think being a Black pansexual trans woman affects my hypertension directly is stress.... I hadn’t had super high blood pressure until I came out.... It’s a mental exercise to leave the house now, you know, and to feel confident enough that you would get from point A to point B and back to point A safely.... On a racial level, there’s a societal stigma that Black people aren’t intelligent.... I’ve noticed a very real sense of entitlement in medical health professionals and mental health professionals around hypertension, around STI [sexually transmitted infection] prevention.... “I’m a doctor. I know more than you, period. So here’s what you’re going to take.”
For Vita, her Blackness and transness are necessarily intertwined, and both affect how she navigates through the world. During the interview, she also noted that she knows a great deal about her own lived experiences and needs, which contributes to her frustration when clinicians unilaterally decide they know what is best for her. They fail to understand who she is, what she knows, or how to help her.
Vita’s experience is too common. Few care team members have received training in how to care for lesbian, gay, bisexual, transgender, and questioning and/or queer (LGBTQ) people of color. All too often, LGBTQ people of color receive poor-quality care and have negative experiences interacting with the healthcare system.1 Not surprisingly, they may delay or avoid care, and many may feel unsafe disclosing their sexual orientation or gender identity to health providers.
Having long been marginalized, LGBTQ people tend to carry greater burdens and to endure greater power imbalances in society at large and with their care teams. As a result, they have higher rates of many conditions—including mental health disorders, suicidal behaviors, substance misuse, HIV, and diabetes—compared with their heterosexual peers, and they need competent, high-quality care.2 LGBTQ people of color often face the highest rates of these conditions (due to how society reacts to their intersecting identities, leading to greater marginalization); they are less likely than white LGBTQ individuals to seek preventive care, have a regular health provider to help them manage chronic health conditions, or have health insurance.3
The onus should not be on patients to effectively navigate a complex healthcare system that, all too often, does not welcome their multifaceted identities. LGBTQ patients of color like Vita deserve our full attention and need our best efforts. As healthcare providers, we should educate ourselves about the issues they face and strive to improve our care. Fortunately, Vita and her peers give us a starting place: listening to them. By sharing their stories and recommendations, Vita and her peers also remind us that they are resourceful, strong, and capable individuals who have the lived experience and expertise to help us improve the healthcare system.
Our group at the University of Chicago has been studying how to improve shared decision making between clinicians and LGBTQ people of color through our Your Voice! Your Health! project.* We have performed and analyzed individual interviews and focus groups with more than 200 LGBTQ people of color. Our article shares the voices and experiences of these individuals and draws heavily from the lessons learned from this work. After a brief history and some terminology, we describe what we have learned about shared decision making. In sidebars, we also suggest ways to make the clinical environment more welcoming and offer training resources for clinicians, including opportunities to become advocates.
A Brief History of LGBTQ People of Color in the United States
The movement for LGBTQ rights and well-being began as early as 1924, when the Society for Human Rights was established in Chicago, the first gay rights organization in the United States. Like the civil rights movement focused on reducing anti-Black racism and dismantling Jim Crow, the gay rights movement in the United States grew in the years after World War II as LGBTQ people faced increasing hostility from the government and the medical establishment; thousands of people lost their jobs, and many others were imprisoned, committed to institutions, or forced to endure “treatments” such as castration and electric shock therapy.4 LGBTQ people of color, subject to not only racial but also sexual and transgender discrimination, faced even greater barriers to acceptance than their white peers.5
There is a significant history of nonviolent protest and civil rights advocacy by LGBTQ individuals in the 1950s and 1960s. In many ways, these pushes for equality were quite similar, but the challenges were so great that the movements did not publicly unite. For example, Bayard Rustin was an essential leader for several decades in the fight for racial equity. He was an advisor to Rev. Dr. Martin Luther King Jr. and an organizer of the March on Washington for Jobs and Freedom (among many other accomplishments). But as a gay man, he was kept in the background out of fear that his sexuality would detract from the racial justice cause. People of color were similarly sidelined in the gay rights movement; the leaders of the largest organizations were predominantly white, and the focus on decriminalizing homosexuality centered on images of white men, ignoring the disproportionate effects of police brutality and other violence experienced by LGBTQ people of color.6 Still, roughly parallel progress was made, often with advocates for gay and trans rights adopting strategies successfully pioneered by Black activists in the fight for racial justice.7
Not long after landmark civil rights legislation passed, the LGBTQ movement gained significant momentum with the 1969 Stonewall Uprising in New York City, when people protested the police raiding the Stonewall Inn, a gay club in Greenwich Village. Such raids were frequent throughout the country at locations where LGBTQ people gathered. The names of those arrested were often published in newspapers, resulting in many individuals losing their jobs. Marsha P. Johnson, a Black transgender woman, and Sylvia Rivera, a Latina transgender woman, were two of many pivotal leaders of color in the Stonewall Uprising and the broader gay liberation movement.8
Today, there is broader recognition of how these struggles are connected as the fights for racial, sexual, and gender equity continue.† Although President Biden signed an executive order expanding protection for LGBTQ individuals against discrimination in employment to also include domains of healthcare, housing, and education,9 multiple states continue to attempt to pass anti-LGBTQ legislation,10 and discrimination and violence against LGBTQ persons of color are all too common. For example, at least 44 transgender or gender nonconforming individuals, largely Black and Latinx transgender women, were murdered in 2020, with likely more deaths unreported. According to the Human Rights Campaign,
Some of these cases involve clear anti-transgender bias. In others, the victim’s transgender status may have put them at risk in other ways, such as forcing them into unemployment, poverty, homelessness and/or survival sex work.
While the details of these cases differ, it is clear that fatal violence disproportionately affects transgender women of color—particularly Black transgender women—and that the intersections of racism, sexism, homophobia, biphobia, transphobia and unchecked access to guns conspire to deprive them of employment, housing, healthcare and other necessities.11
LGBTQ Terminology and Concepts 101
I think it’s important on multiple levels for my healthcare provider to know about my gender identity and gender expression.... What would be more important to me is that they have a context for that.... Rather than it being on me to disclose that, ... doctors and providers [should] already have an awareness around issues.... I would want a doctor to understand that there’s ... a spectrum.... Not all trans masculine people are going to identify as traditionally masculine.
–Sam (Asian American, Taiwanese American, biracial, queer, pansexual, trans, transmasculine, genderfluid, genderqueer)
To provide high-quality care for LGBTQ people, it is important to understand basic definitions and concepts related to sexual orientation and gender identity.‡ The table below introduces widely used terms and essential concepts. Keep in mind that aspects of sexual orientation and gender identity will change for some people over the course of their lives, including later stages of life. Some people may also experience one or more periods of exploring, or being unsure about, different aspects of their sexual orientation or gender identity.
|Basic LGBTQ Terms and Concepts|
Sex assigned at birth, typically conceptualized as male, female, or intersex (not fitting the typical definitions of male or female bodies).
Intersex is an umbrella term for differences in sex traits or reproductive anatomy. Intersex people are born with these differences or develop them in childhood. There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes, compared with the usual two ways that human bodies develop. Sometimes you will see the acronym LGBTQI. The “I” refers to intersex people.*
An individual’s attraction, behavior, and identity related to sexual desire.
The attraction component of sexual orientation consists of the sexes and genders of the people we find attractive. The behavior component consists of the sexes and genders of people with whom we have sex. The identity component consists of the way that we describe our sexual orientation to others.
Terms to describe sexual orientation include but are not limited to asexual, bisexual, lesbian, gay, queer, pansexual, demisexual, and straight.
A person’s internal sense of their gender.
Everyone has a gender identity. Most people have an internal sense of gender that aligns with their sex assigned at birth. Some people experience their internal sense of gender as neither male nor female, but something in between. Some people have an experience of their gender that shifts or changes over time. And others report feeling no internal sense of gender.
Terms to describe gender identity include but are not limited to man, woman, trans, transgender, genderqueer, genderfluid, gender nonconforming, and nonbinary.
How an individual presents their gender identity (speech patterns, clothing, mannerisms, hairstyle, etc.).
There are spoken and unspoken cultural norms regarding how people express their gender. Clothing, hairstyles, leisure activities, vocations, and body language are often associated primarily with binary male or female gender. Family and community members often respond negatively, from mild nonverbal expressions of disapproval to assault or homicide, when individuals do not conform to expectations regarding gender expression.
Terms to describe gender expression include but are not limited to masculine, feminine, femme, butch, androgynous, and nonconforming.
Describes an individual whose gender identity does not align with their sex assigned at birth.
For example, someone who was assigned female sex at birth but has a gender identity of male might describe himself to others as a transgender male or man, or trans male or man, or transmasculine. This term is not to be used as a noun (e.g., “the transgenders” is inappropriate).†
Describes an individual whose gender identity aligns with their sex assigned at birth.
For example, someone who was assigned female sex at birth and has a gender identity and expression of female (i.e., whose internal sense of gender and gender expression aligns with cultural norms for femininity) might describe herself as cis or cisgender.
Queer is a complex concept. There are many ways that people use the term queer to describe one or more aspects of their identity. For some, queer can be an umbrella term for sexual and gender minority people (i.e., people who are not part of the cisgender and/or heterosexual numerical majority). For others, queer can be a sexual orientation or gender identity distinct from other terms such as gay or lesbian. Some people may use the term in yet other ways.
Of note, the term queer has historically been used as a slur. However, many in the LGBTQ community have reclaimed the term and use it in an affirming way to describe their gender and/or sexual orientation. For some, the use of the term can help them avoid stereotypes held by others regarding terms such as gay, lesbian, and bisexual. Others may use the term to affirm aspects of their identity that are nonbinary or may shift over time.
If you have a patient who identifies as queer, you can respectfully ask them what it means for them personally, if you need to know in order to provide them with high-quality healthcare (and not just for your own curiosity).
Do not assume that every LGBTQ patient will identify as queer or will welcome people who do not identify as queer using the term. For example, some patients may react negatively to being referred to as queer due to past or current bullying, abuse, or assault by others who used the term to degrade and dehumanize them.
* To learn more about intersex people, visit the InterACT website. (return to table)
† The National Center for Transgender Equality has a user-friendly resource hub called “About Transgender People” where you can learn more. (return to table)
Intersections of Race, Ethnicity, Sexual Orientation, and Gender Identity
Rooted in Black feminist theory and drawing upon earlier work by Anna Julia Cooper, W. E. B. Du Bois, and others, law professor Kimberlé Crenshaw describes intersectionality as how multiple identities and systems of oppression (e.g., racism, sexism, homophobia) interact, giving us an understanding of individuals and their multifaceted identities that we could not gain by examining each identity or system of oppression on its own.12 For example, a Black lesbian person may navigate the world in a different way than a Black straight woman or a white lesbian person, and in an altogether different way than a white straight woman or man.
Intersectional theories state that failure to recognize and address the powerful effects of structural racism, discrimination grounded in cultural norms for gender expression, or other systemic forms of oppression of marginalized populations prevents clinicians and healthcare systems from providing the best care to LGBTQ people of color.13 Consider the challenges that Aurora and Don face.
The only thing I had out there to go to ... [were] nightclubs or bars; and the bars that were available, they were predominantly white.... In the Latino community, ... you’re a female or a male, and you do certain things a certain way as a male or a female. You look a certain way as a male or a female, and I bend all those rules.
–Aurora (Mexican American, Latina, lesbiana, lesbian)
Being African American has been the predominant identity in my life—not just for me, but in terms of the way people identify me and interact with me.... Race is really a very strong determinant of my interactions in society. I have been aware of mortality and threats to life for a long time, everything from lynching to neighborhood shootings; there’s a constant threat to life and safety for African American men.... I have never been, in the LGBT community, just a gay man. I have always been a Black gay man. And that has determined in most cases how people interact with me. For a very long time, Black men were generally not particularly welcome on the strip, on Halsted Street, in the center of the geographic [Chicago] gay community.
–Don (cisgender, profeminist, gay, single-gender-loving man of African descent)
Different identities can vary in importance and can vary by context. Aurora identifies as Latina, but she has struggled to find a Latina lesbian community and to be accepted in the broader Latinx community. Don states that being African American has been his most predominant identity, and that he has experienced racism in both heterosexual and homosexual communities. As a healthcare provider for Aurora or Don, how would you seek to understand their lived experiences in all of their complexity? How would you help reduce the stressors they face?
Clinical Best Practices for Shared Decision Making
There is so much stigma associated with being trans, especially a trans woman of color, and a lot of times they [healthcare providers] push that stereotype upon you. The biggest one, obviously, is HIV in our community as trans-identifying people, especially trans women of color.... It’s a terrible thing when you go into an office and they are giving you all these little signs and you’re internalizing them, and you’re like, they think I’m positive. Or they’re just already assuming that I’m HIV positive as a trans woman ... or that we’re completely infected with every STI available. They put the gloves on right away.... They don’t think we see that—we do. It’s a big reason why [there is] a lot of distrust in the medical field.... It’s insulting.
–Reyna (Latina, transsexual)
Pause for a moment to imagine your first encounter with Reyna. What assumptions have you made based on her appearance—and how can you let go of them? What is your body language conveying? Are you ready to listen to Reyna, to appreciate her humanity, and to engage with her as an equal partner in making choices about her health?
Shared decision making is a patient-provider communication tool that takes into account a patient’s needs and preferences and supports their participation in decisions about their care.14 It has been conceptualized as having three domains: information sharing (the clinician and the patient share information with one another about the health condition and illness), deliberation (the clinician discusses different treatment options and elicits the patient’s preferences, needs, support structures, and goals), and decision making (the clinician and the patient make decisions together on the approach to health and treatment). Disparities in how well clinicians engage LGBTQ patients in making decisions about their health may contribute to the difficulties LGBTQ people of color face in accessing care and obtaining appropriate treatment for physical and mental health conditions.
We have drawn upon our Your Voice! Your Health! project and our prior papers to develop the following suggestions to help clinicians improve their communication and shared decision making with LGBTQ people of color.15 Most of the lessons come directly from the LGBTQ people of color we interviewed about their experiences receiving healthcare. We cover (1) educating clinicians, (2) establishing safe spaces, and (3) asking questions. In addition, the table below provides specific advice with examples.
|Recommendations for Healthcare Teams|
|Reflection, Empathy, and Partnership|
|Understand how marginalization and discrimination may have affected your patients||
Understand intersecting identities; avoid assuming that different subgroups of sexual and gender minority populations have similar life experiences and healthcare needs
Recognize and reduce personal and team biases
|Language, Knowledge, and Environment|
|Strive to become culturally competent and sensitive with terminology and language||
Adapted from S. C. Cook, K. E. Gunter, and F. Y. Lopez, “Establishing Effective Health Care Partnerships with Sexual and Gender Minority Patients: Recommendations for Obstetrician Gynecologists,” Seminars in Reproductive Medicine 35, no. 5 (2017): 397–407, copyright © 2017 by Thieme Medical Publishers, Inc., www.thieme.com (reprinted by permission).
*For more on the importance of cultural humility in partnering with communities to address health disparities, read “Brave Spaces: Community-Driven Anti-Racism Partnerships.” (return to table)
One of the best ways to improve the quality of care you provide to LGBTQ people of color is to learn more about them and get to know them. For examples of steps you or your healthcare organization can take, see the table above. In general, attempt to take on your patients’ perspectives, keeping in mind their intersecting identities. Learn to look for and recognize your personal responses, thoughts, and feelings regarding sexual and gender minority patients of color that are based on stereotypes. And remember that many LGBTQ people, and many people of color, have experienced discrimination and culturally incompetent healthcare. Some LGBTQ people, especially transgender patients, have been abused in healthcare settings.16 Gaining the trust of LGBTQ people of color who have been discriminated against or abused in healthcare settings is especially challenging—but that makes it all the more important.
The LGBTQ people of color we interviewed asked that healthcare providers:
- Learn the basics of care of LGBTQ persons.
“Well she knows what gay means, and she knows what like bisexual means ... [but not queer]. Do I really want to go to a therapist where ... I have to spend half the time trying to teach them ... [about] my issues?” (Korean/Korean American gay/queer trans male)
- Recognize the heterogeneity within LGBTQ people of color communities.
“Understand that the LGBTQ community is just not under one umbrella.... I mean, a queer Asian man is going to have a different experience from a queer Black female.” (Queer multiracial Asian man)
“It’s one thing to be identified as Asian American, but there are still differences between like Southeast Asian, South Asian, and everything else as well too. So it’s not a one size fits all.” (Filipino American gay male)
- Be cognizant of intersecting identities.
“It’s not like I’m choosing to be Black on this day and I’m choosing to be gay on this day, but both are facets of who I am.” (Black gay male)
“The South Side, where I grew up, it’s very homophobic.... We’re really into the church and condemnation about homosexuality.... I had an aunt that told me ... ‘I don’t mind you people being gay, but why do you have to march in that parade where everybody can see you?’ ... If you are gay, you have to keep it in the closet and act like a straight man.” (Black gay man)
- Be aware of implicit and structural biases.
“They [providers] automatically assume that all gay men ... receive anal sex. Some people assume that gay men are just so promiscuous, and we’re just out here doing any and everybody.” (Black gay man)
“As somebody with ... a Mexican last name and as a Mexican person, I think folks ... will raise their eyebrow about ... the fact that I’m bringing in a passport [as a form of identification]. Like, is this a cover up? Is this somebody who’s ... using a false document? ... Which is funny because ... my motivation to use it is actually about my gender identity!” (Latinx transgender man)
“My provider would make assumptions about me just because of my race and my being transgender. Like, ‘Oh, so are you a sex worker? Are you this, are you that?’ ” (Black transgender woman)
“You have more of a positive image tied to you as a white trans person than a Black trans person … because of how Black trans people are portrayed so often. We’re always seen as like the worst possible versions of ourselves.” (Black transgender woman)
“Whiteness in general carries a certain amount of benefit of the doubt. So I think there would be less doubt about the validity of my identity in general [if I were white].” (Latinx masculine gender-nonconforming person)
- Avoid using patients as learning tools.
“They’re using me as a way to learn for themselves.... Especially first-year residents.... ‘How does a guy put a penis in another guy, doesn’t that hurt?’ These aren’t appropriate questions.... It’s basically irrelevant questions ... either about my racial identity or my sexual identity.” (Mixed Filipino queer cis man)
Establishing Safe Spaces
Before healthcare providers can effectively create safe spaces (i.e., spaces in which patients will feel good about sharing their identities), they must grasp the cultural diversity that exists within LGBTQ populations. For example, within the Latinx LGBTQ population, here are several key factors that may affect care for some but not all patients:17
- limited English proficiency and/or undocumented immigration status
- family stigma and lack of social support (e.g., around issues such as cultural expectations of masculinity or femininity)
- interest in using alternative therapies, such as visiting curanderos or botánicas offering herbal and folk remedies18
- traditional perceptions of the clinician-patient relationship that rely on patients’ deference to medical authorities, which may hinder open communication and shared decision making
- strong religious beliefs
And here are some related and some unique factors that may affect some Asian American LGBTQ patients:19
- new or recent immigration, limited English proficiency, and/or varying levels of acculturation
- family stigma and conflicts with family and community about cultural norms related to sexual orientation and gender identity
- stereotypes related to race, ethnicity, and gender (e.g., model minority; perpetual foreigner; emasculated Asian man; exoticized, submissive Asian woman)*
- invisibility of Asians in the United States, predisposing them to institutionalized, personally mediated, and internalized racism
Although this is just a small sample of the cultural knowledge clinicians need to cultivate, we hope it shows how cultures impact lived experiences and thus healthcare needs. Still, while it is helpful to be aware of common threads across patients, healthcare professionals must individualize care to specific patients, avoiding stereotypes.20 In addition, it is our responsibility to reform systems of care delivery to better meet patient needs rather than putting the onus of responsibility on, or blaming, the patient (e.g., complaining that a patient has limited English proficiency or cultural norms that differ from our own).
With this understanding of the groundwork that clinicians need to do, here are some suggestions from the LGBTQ people of color we interviewed:
- Take the initiative to be welcoming.
“[The provider could say], ‘I’m open about your sexual identity. It’s an open space, and we’re not going to feel pressured if you don’t want to talk about it.’ ” (Chinese gay male)
“We already ... have issues with healthcare providers.... A lot of people are just uncomfortable disclosing ... their sexual identity.” (Black gay man)
- Be aware of the bidirectional implicit biases and fears that may exist between clinician and patient.
“I chose someone with an Asian American background, because I think there’s some commonalities among Asians in terms of lived experience.” (Asian Pacific Islander gay male)
“Well if the doctor is Filipino, I would generally avoid [talking about] the whole [LGBTQ] identity, because even though they’re supposed to keep everything confidential, the reality is ... being Filipino is a small world, at times.... Somehow it ... gets back to my family.” (Filipino American gay male)
“It’s so rare to have a provider that’s a person of color that I fear alienating that person. So it feels easier to just pass and maybe connect with that person from that one identity and wait to see how safe it is before disclosing the other identity.” (Latinx masculine gender-nonconforming person)
- Understand that the clinician does not need to be a member of the LGBTQ population or a person of color to establish trust and rapport.
“I wouldn’t say that I necessarily need to have a doctor that looks like me. But ... I need to be able to have a provider that empathizes with that I’m a person of color and that I’m transgender at the same time. That ... one doesn’t cancel out the other.” (Transgender woman)
“I don’t care if you’re Black, white, or whatever. As long as you understand the trials and tribulations of the trans woman of color, I’m cool with you.” (Latinx transgender woman)
- React appropriately.
“When I finally disclosed that I was gay, usually their body language, how they reacted towards me, did change.” (Asian American LGBTQ individual)
“If I were a healthcare provider, [I] would be like: ‘Yeah, we should check in with our patients more about those things [HIV risk, HIV prevention, gender identity, and sexual orientation] and hopefully that can remove the stigma a little bit.’ ... If we treat them as very common things that we can take care of, because human beings are human beings and this is a part of who they are, ... then maybe people would want to talk about it more often.” (Black trans woman)
- Do not ignore intersecting identities or default to issues you find more comfortable.
“[The mental health provider], she’ll kind of reroute back to ... it not having to do so much with identity and having to do more with like, ‘Oh, well, maybe you’re feeling this thing because, you know, this person just wasn’t being that great of a friend to you.’ … She won’t use the frameworks that I have come at her with to offer something helpful back to me.... She won’t reference me being queer or a person of color or a biracial person to help me understand any of what I’m coming to her with, which is strange.” (Biracial queer female)
Although our studies focus on many different populations, across the board LGBTQ people of color wish for clinicians to educate themselves about the history, culture, and oppression that underlie their communities. Some persons emphasized the need for providers to do this work before the clinical encounter so that the responsibility doesn’t fall on the patient to explain their identities, which could erode trust in their relationship. Still, each person is unique and it’s crucial to avoid stereotyping or making assumptions—so asking open-ended questions is essential.
Study participants emphasized how important they found agency in the shared decision making process, whether that related to a treatment or screening decision or setting their own priorities for a particular clinical visit. We encourage providers to empower their patients with knowledge of options and provide space for mutually respectful, bidirectional conversations—including asking questions about patients’ goals, preferences, and values. The heterogeneity of LGBTQ people of color highlights the need for providers to listen to and communicate with each patient as a distinct individual who may have experiences and beliefs that align with or deviate from themes presented in the research here or elsewhere.
- Ask for the patient’s pronouns; apologize if you accidentally misgender the patient.
“[After] slipping [pronouns] up, ... they would just blame it ... [on being] a legal thing.... [It] really deterred me from even wanting to be within any type of healthcare.” (Pacific Islander, Asian queer male)
- Ask what the patient would like to talk about and address during the visit.
“I guess a lot of it is timing in terms of ... shared decisions.... What I struggled with is when I have a lot of things going on, whether it’s family, my partner, or identities, ... [I don’t know] which to focus my energy towards for that day. I can’t tackle it all at once. And in terms of making those decisions with my therapist, ... they are very aware.” (Mixed Filipino queer cis man)
- Ask about mental health.
“At the point where your physician knows that your sexuality is different, ... I would like the physician to really push the envelope and then check in more often about mental health. Because the fact of the matter is, I do feel that being these minority identities, that we do face more challenges more often.” (Asian American LGBTQ individual)
- Ask if there are cultural issues to be aware of.
“The very few times [the provider] ever addressed the family issue, it’s always been like, ‘Why do you care what your family thinks?’ ... They didn’t really understand or grasp how deep [family’s] influence was. It was always like, I felt, especially in Asian cultures, it’s like family is a very strong influence in our lives.... I was like, ‘Do you not get it?’ ” (Asian American gay/queer male)
- Strive to understand and validate the patient’s lived experience.
“You [the provider] have this training, ... this expertise. But if you’re looking at a human being and telling them that the things they feel and experience aren’t valid all the time, then they are not going to trust you. There could be things that they don’t know about and it’s your responsibility to inform that patient without contradicting them and making them feel like shit.” (Black trans woman)
It’s long past time to end the marginalization of LGBTQ people of color. Too often, they receive inadequate, low-quality care, and for far too long, they have endured serious health disparities. We have shared the voices of LGBTQ people of color to provide insights into the issues affecting their health and the safe spaces they need. Clinicians have exciting opportunities to make a difference—to improve their communication and shared decision making with patients, enhance the way their clinics are organized and care for LGBTQ people of color, and transform how they teach their colleagues and advocate for their patients.
Stephanie Bi, MD, graduated from the University of Chicago Pritzker School of Medicine and is a resident in the psychiatry department at the University of Pennsylvania. Scott C. Cook, PhD, is a codirector of Advancing Health Equity: Leading Care, Payment, and Systems Transformation at the University of Chicago. Marshall H. Chin, MD, MPH, also codirects Advancing Health Equity and is the Richard Parrillo Family Professor of Healthcare Ethics at the University of Chicago.
*To learn more about this project, visit go.aft.org/r2b or see “Improving Shared Decision Making with LGBT Racial and Ethnic Minority Patients, available at go.aft.org/6m9, by M. Chin et al. in the Journal of General Internal Medicine 31, no. 6 (June 2016): 591–93. (return to article)
†For a comprehensive overview of key frameworks and concepts for the health and well-being of diverse LGBTQ populations, read Understanding the Well-Being of LGBTQI+ Populations, from the National Academies of Sciences, Engineering, and Medicine, available for free at go.aft.org/41o. (return to article)
‡This video (go.aft.org/fp8), created by the New York City Health and Hospitals Corporation, explains why knowing about a patient’s sexual orientation and gender identity is as important for their care as knowing their blood pressure and temperature. (return to article)
1. M. Chin et al., “Improving Shared Decision Making with LGBT Racial and Ethnic Minority Patients,” Journal of General Internal Medicine 31, no. 6 (June 2016): 591–93.
2. US Department of Health and Human Services, “Lesbian, Gay, Bisexual, and Transgender Health,” Office of Disease Prevention and Health Promotion, healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health; H. Hafeez et al., “Health Care Disparities Among Lesbian, Gay, Bisexual, and Transgender Youth: A Literature Review,” Cureus 9, no. 4 (April 2017): e1184; and J. Krehely, How to Close the LGBT Health Disparities Gap: Disparities by Race and Ethnicity (Washington, DC: Center for American Progress, December 21, 2009), cdn.americanprogress.org/wp-content/uploads/issues/2009/12/pdf/lgbt_health_disparities_race.pdf.
3. US Department of Health and Human Services, “Lesbian, Gay, Bisexual, and Transgender Health”; Hafeez et al., “Health Care Disparities”; and Krehely, How to Close.
4. History.com, “Gay Rights,” A&E Television Networks, May 27, 2021, history.com/topics/gay-rights/history-of-gay-rights.
5. S. James, “Queer People of Color Led the LGBTQ Charge, but Were Denied the Rewards,” New York Times, June 22, 2019.
6. K. Peacock, “Race, the Homosexual, and the Mattachine Society of Washington, 1961–70,” Journal of the History of Sexuality 25, no. 2 (May 2016): 267–96.
7. J. Yurcaba, “Different Fight, ‘Same Goal’: How the Black Freedom Movement Inspired Early Gay Activists,” NBC News, February 28, 2021.
8. G. Brockell, “The Transgender Women at Stonewall Were Pushed Out of the Gay Rights Movement. Now They Are Getting a Statue in New York,” Washington Post, June 12, 2019.
9. “Executive Order on Preventing and Combating Discrimination on the Basis of Gender Identity or Sexual Orientation,” January 20, 2021, White House Briefing Room, whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-preventing-and-combating-discrimination-on-basis-of-gender-identity-or-sexual-orientation.
10. W. Ronan, “2021 Officially Becomes Worst Year in Recent History for LGBTQ State Legislative Attacks As Unprecedented Number of States Enact Record-Shattering Number of Anti-LGBTQ Measures into Law,” Human Rights Campaign, press release, May 7, 2021.
11. Human Rights Campaign, “Fatal Violence Against the Transgender and Gender Non-Conforming Community in 2020,” hrc.org/resources/violence-against-the-trans-and-gender-non-conforming-community-in-2020.
12. K. Crenshaw, “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics,” University of Chicago Legal Forum 1989, no. 1 (1989): 139–67.
13. L. Bowleg, “ ‘The Master’s Tools Will Never Dismantle the Master’s House’: Ten Critical Lessons for Black and Other Health Equity Researchers of Color,“ Health Education & Behavior 48, no. 3 (2021): 237–49.
14. M. Peek et al., “Development of a Conceptual Framework for Understanding Shared Decision Making Among African-American LGBT Patients and Their Clinicians,” Journal of General Internal Medicine 31, no. 6 (2016): 677–87.
15. S. Howard et al., “Healthcare Experiences of Transgender People of Color,” Journal of General Internal Medicine 34, no. 10 (2019): 2068–74; S. Bi et al., “Improving Shared Decision Making for Asian American Pacific Islander Sexual and Gender Minorities,” Medical Care 57, no. 12 (December 2019): 937–44; M. Acree et al., “Shared Decision-Making Around Anal Cancer Screening Among Black Bisexual and Gay Men in the USA,” Culture, Health, and Sexuality 22, no. 2 (2020): 201–16; M. McNulty et al., “Shared Decision Making for HIV Pre-Exposure Prophylaxis (PrEP) with Black Transgender Women,” Culture, Health, and Sexuality (May 2021): 1–20; A. Baig et al., “Addressing Barriers to Shared Decision Making Among Latino LGBTQ Patients and Healthcare Providers in Clinical Settings,” LGBT Health 3, no. 5 (2016): 335–41; and J. Tan et al., “Shared Decision Making Among Clinicians and Asian American and Pacific Islander Sexual and Gender Minorities: An Intersectional Approach to Address a Critical Care Gap,” LGBT Health 3, no. 5 (2016): 327–34.
16. M. Peek et al., “Racism in Healthcare: Its Relationship to Shared Decision-Making and Health Disparities: A Response to Bradby,” Social Science and Medicine 71, no. 1 (2010): 13–17; and S. Mirza and C. Rooney, “Discrimination Prevents LGBTQ People from Accessing Health Care,” Center for American Progress, January 18, 2018.
17. Baig et al., “Addressing Barriers.”
18. R. Padilla et al., “Use of Curanderismo in a Public Health Care System,” Archives of Internal Medicine 161, no. 10 (2001):1336–40; and A. Gomez-Beloz and N. Chavez, “The Botánica as a Culturally Appropriate Health Care Option for Latinos,” Journal of Alternative and Complementary Medicine 7, no. 5 (2001): 537–46.
19. Tan et al., “Shared Decision Making”; N. Muramatsu and M. Chin, “Battling Structural Racism Against Asians in the United States: Call for Public Health to Make the ‘Invisible’ Visible,” Journal of Public Health Management & Practice, publication forthcoming.
20. M. Chin and C. Humikowski, “When Is Risk Stratification by Race or Ethnicity Justified in Medical Care?,” Academic Medicine 77, no. 3 (2002): 202–8.
Funding/Support: This project was supported by the Agency for Healthcare Research and Quality (1U18HS023050), the Chicago Center for Diabetes Translation Research (NIDDK P30DK092949), and the University of Chicago Bucksbaum Institute for Clinical Excellence.