Lessons from gender-inclusive design in healthcare

 By Caitlin Gebhard – Senior Content Strategist

Content warnings: harm to members of the LGBTQIA+ community, trauma, suicide

As Pride Month celebrations begin to wrap up, we take this moment to remind ourselves that acknowledgement, respect, and celebration of the LGBTQIA+ community shouldn’t end. Nor should our work to improve the lives of the queer community.  Across the US, there is a growing wave of new efforts to minimize, and in some cases actively harm, queer, trans, Black, POC, disabled, and other marginalized people. Through our work in design and in industries across the globe, we can start to change the tide and make positive change for everyone.

Today, we focus on the LGBTQIA+ community. We’ll share how we can use inclusive design to continue our acknowledgement, respect, and celebration of people along the gender and sexuality spectrum all year long.

Our understanding of gender is changing. The American Medical Association (AMA), the American Academy of Pediatricians (AAP), the American Psychiatric Association (APA), and others define gender as more than a binary. Gender is best understood as a spectrum of different ways we can think about ourselves, our roles in society, and how we represent ourselves and interact with the world. Some people identify as men or women, but there are myriad genders that don’t fit neatly into those labels.

Many people who exist outside of the gender binary identify as LGBTQIA+. This acronym encompasses the broad range of gender and sexual identities other than straight and cisgender, including: Lesbian, Gay, Bisexual, Pansexual, Transgender, Genderqueer, Queer, Nonbinary, Intersex, Agender, and Asexual people.

Information about gender identity can help drive better personalization outcomes, address erasure, and improve diversity and equity in many other sectors, from fashion to education and beyond – all of which contribute to the wellbeing of the LGBTQIA+ (or queer) community.

But when we ask people about their gender, such as during enrollment or onboarding experiences, we need to pay attention to how we ask for it. Many people will identify with one of the ubiquitous male/female options. When they don’t, it can be a hurtful indication that this experience wasn’t designed for them.

The way we ask about someone’s gender is particularly important in healthcare. Our mental and physical wellbeing are, in many ways, closely tied to the complexities of our identities. By collecting gender information in an inclusive way, institutions can provide more accurate and effective health care services.

Regardless of the products and services we provide, we can look to the healthcare industry to help us reframe the conversation on gender and design. The conversation isn’t always easy. Building inclusive design practices can be challenging. But with recipes to help ground our work in community-based, proven best practices, we can start to do better.

“Queer”

“Queer” is an umbrella term often used to describe sexual preferences, orientations, and habits of people outside the cisgender, heterosexual, and monogamous majority. But queer is complicated. This word has been used as a slur to insult, belittle, and harm LGBTQIA+ people throughout history. Today, many LGBTQIA+ people are reclaiming the label, and in younger generations, even favoring it. Queer is used to express that gender and sexuality are complicated. They might not always fit into labelled identities, and they may evolve over time. “Queer” is used as a political identity and a community-building affirmation. More and more, it is considered the most respectful and inclusive way to refer to people with diverse genders and sexualities.

As with all labels and descriptions, asking individuals about their preference, particularly regarding words with complicated histories, is important. This article uses “queer” to encompass and respect the vast range of gender identities and sexualities beyond the majority.

The Queer American Landscape

The percentage of Americans who identify as queer is rapidly increasing, particularly in younger generations. According to recent Gallup polls, 7.6% of U.S. adults identify as lesbian, gay, bisexual, transgender, or something other than straight or heterosexual.^[1] For younger generations, the numbers are higher: roughly 22% of Generation Z Americans who have reached adulthood – those born between 1997 and 2012 – identify as LGBT.

Pew Research also revealed that 1.6% of U.S. adults identify as trans or gender-nonbinary. For adults younger than 30, the population is more than 5%.

[1] While this survey included transgender in a grouping of sexualities, we understand that transgender is a gender label and is not a sexuality.

While some queer people are thriving and finding new ways to support and celebrate their community, many others face myriad hardships. Queer, particularly transgender, people are more likely to experience unstable housing, underemployment, wage disparities, limited access to healthcare, and discrimination and violence at school, at work, and at home. The prevalence is even higher for people who are Black, People of Color, and/or disabled.

Queer Health

Queer people also experience a host of health disparities, including undiagnosed or untreated diseases, lack of gender-affirming care, lack of health insurance, under-representation in medical research, and even face-to-face discrimination and harm in healthcare settings.

Queer people are also more likely to experience certain physical health issues, often related to the stigma and discrimination they experience in their daily lives. Unfortunately, some health issues pose unique risks to queer people and queer bodies. For example, while tobacco use is more prevalent in the queer and transgender community, smoking is a particular risk for transgender people who take estrogen, as the combination increases the chances of blood clots.

Studies also show that lesbian, gay, and bisexual adults are twice as likely as heterosexual adults to experience a mental health condition. Transgender adults are nearly four times as likely. This is especially true for LGBTQ+ youth, who consistently report significantly higher rates of depression and suicidal ideation than their straight and cisgender peers.

Access to Healthcare

Health concerns are partly caused by the mistreatment and discrimination queer people experience when trying to access healthcare. According to the 2022 Health Equality Index Report, more than half of queer respondents reported that they had experienced at least one type of discrimination, from being refused care to being verbally harassed.

A resurgence of anti-queer hostility and rhetoric across the U.S. political landscape is making things worse. 2024 marks the fifth consecutive record-breaking year for anti-trans legislation, targeting education, legal recognition, and the right to publicly exist – with an escalating focus on healthcare. Last year, 86 anti-trans bills passed in 24 states, 23 of which create significant barriers to gender-affirming care. As of June 2024, an unprecedented 61 bills are being considered at the federal level.

These experiences have driven a great distrust in the healthcare system. Studies show that some queer people avoid seeking healthcare out of concern that they would face discrimination or poor treatment. In one report, 73% of transgender respondents and 29% of lesbian, gay, and bisexual respondents reported that they believed they would be treated differently by healthcare providers because of their identity.

Progress

But there has also been significant progress. The number of healthcare institutions that embrace and make progress on queer equality is growing. Institutions are working to build safer spaces and more culturally sensitive services. When providers demonstrate knowledge of and sensitivity about queer communities, queer patients are more likely to build trust and establish relationships and practices that support their health.

Best Practices: Learning from healthcare

Grounded in research and collaboration with the queer community, healthcare institutions have developed best practices for asking people about their gender identity and sexual orientation. Collecting this information not only helps to provide culturally sensitive and effective treatment, but also helps to end queer erasure in health care and to measure quality and progress in eliminating disparities.

We’ll explore recommendations and best practices for patient intake, enrollment, and digital health experiences. For some organizations, these recommendations may be a first step to developing queer inclusive practices. They can help us better understand the nuances of gender, the queer experience, and how we can best support people of all genders, within the healthcare industry and beyond.

Collecting information

Choose your words carefully.

The U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) strongly urges providers to use appropriate language in their practices and policies. This can help providers and their patients build a more trusting, effective relationship – and help patients get the care they need.

As with any population, it is important to talk to and about queer people in the way that they want to be referred to.

In general, avoid gendered language. Use singular “they” instead of “he/she” or “s/he”. Consider using “people” or “people of all genders” instead of “men and women”, as appropriate.

Neutral language can also help us check our assumptions about queer identities. For example, instead of “transgender men and women,” say “transgender people.” Not all transgender people are (trans) men or (trans) women; in fact, about one-third of trans people are non-binary.

Additional best practices:

For more comprehensive guidance, see:

• GLAAD Media Reference Guide: Transgender Terms
• National LGBTQIA+ Health Education Center: Glossary of Terms for Healthcare Teams

Collect multiple data points.

Many healthcare institutions recommend collecting information about someone’s gender using a set of multiple questions, for example:

• Current gender identity
• Sex assigned at birth
• Trans identity or experience

It is essential to ask a range of questions about someone’s identity while also providing a diverse and inclusive list of gender identities to choose from.

While some people assigned a different gender at birth refer to themselves as transgender, others do not. Many use the labels “trans men” or “trans women.” Others may be a combination of genders or outside of the male/female binary altogether (e.g., nonbinary, genderqueer, agender, etc.). Nonbinary people may or may not also identify as transgender.

By asking about current gender identity, sex assigned at birth, and trans experience, organizations can better understand the full range of an individual’s needs – such as anatomically appropriate preventive screenings – and provide more accurate and effective services.

Example from Fenway Health

An alternative way to separate transgender from the binary of man/woman is to list the transgender option separately, and allow for multiple selection:

• Female/Woman
• Male/Man
• Transgender
• Nonbinary, genderqueer, Two Spirit, or not exclusively male or female
• Another gender ______

If you need to use the binary…

You may need to include a question that only offers the binary male/female option. For example, your databases or a third-party partner, such as an insurance company, may not collect or be able to integrate more diverse data.

This type of question should be additional and separate and include an explanation of why it provides only the two options. In the following two examples, the healthcare institutions also acknowledge that the question does not align with their own inclusive practices, which may help mitigate any discomfort with this question.

Create space for unlisted genders.

Some people may feel overwhelmed when presented with a long list of gender options. But excluding some gender identities can cause harm – and introduce inaccurate data.

When providing a shorter list of options, as above, include space for someone to write-in their gender identity if it is not listed explicitly on the form. Be sure to phrase this option without using “other” (e.g., “other gender”). This language explicitly others people who fall outside of the acknowledged genders on the form. Instead, label the field with “another gender” or something similar.

Allow more than one selection.

Gender identity is also fluid and may be described in different ways. A transgender person may be trans as well as nonbinary. Someone may identify as man, woman, and genderfluid.

When asking about someone’s gender identity, let them select multiple options.

Ask for name and pronouns.

In addition to asking about someone’s gender identity, healthcare organizations suggest asking for their pronouns and their current name or alias. In healthcare settings and in general, routinely using a name or pronoun that doesn’t match someone’s current identity (i.e., their “deadname”) is stigmatizing and can create a more hostile environment.

Note that someone’s pronouns aren’t their preferred pronouns; they are simply the pronouns that someone uses. They also aren’t inherently tied to gender identity or biology. Avoid describing pronouns as:

• preferred pronouns
• masculine/male pronouns
• feminine/female pronouns
• non-binary pronouns

The CDC recommends listing the most common pronouns and leaving space for people to write-in their own if they aren’t listed (e.g., neopronouns):

• He/him
• She/her
• They/them
• Not listed:______________________

Collect anatomical information with care.

Someone’s gender identity doesn’t necessarily reveal details about their anatomy – an important consideration when providing healthcare. If you need to collect this information, the Healthcare Equality Index recommends explicitly and inclusively collecting anatomical information (e.g., “organ inventory”).

Using neutral language helps us ask about someone’s body with sensitivity and respect. It also helps us check our assumptions about gender and biology. For example, not everyone who can get pregnant identifies as a woman or a mother—just as not everyone who identifies as a woman or a mother can get pregnant. Instead, healthcare providers and others should use more generic or broad terminology, such as “people who can become pregnant”.

Being sensitive about someone’s body and anatomy isn’t just about respect. People with gender dysphoria may be deeply triggered when gendered language is used to describe their body, particularly reproductive anatomy. Instead, use more generic terminology (e.g., genitals, reproductive organs, chest) instead of gender-loaded words (e.g., vagina, penis, breasts).

Make it easy to change.

Gender is fluid, and someone’s understanding of their own identity can change over time. Their name and pronouns might change. They may make changes to their anatomy. But expressing and sharing these changes can be challenging – and traumatic – in many areas of someone’s life.

In healthcare and other spaces, make it easy for someone to change their record or profile as their life evolves.

Transparency

If you need it, explain why.

For healthcare settings, collecting gender, orientation, and anatomy information is critical to providing effective, patient-centered care to queer patients. This information can be important in other settings and industries, too.

However, we need to ask ourselves why we need this information and communicate those reasons to our audience:

• Are you monitoring diversity and acting on the data?
• Are you determining if they are eligible for services?
• Are your required to communicate this information to a third-party (e.g., insurance company)?
• Is it for segmenting personalized services?
• Is it for marketing and communication purposes?

Be honest about what you’re asking and why. This transparency is an important step towards providing a safe experience and fostering trust between individual and organization.

Make it optional.

Even if you explain why you’re asking questions about someone’s identity, some people may still have (valid) concerns about the data collection. They may wonder:

• Will there be consequences if they answer incorrectly (e.g., they didn’t find the right label on the form)?
• Will they be outed somehow? (i.e., will their identity be made public?)
• Will this information lead to discrimination or harm?

Your audience knows better than you if it’s safe or appropriate to disclose their identity in certain contexts.

If this data isn’t critical, make questions about gender identity and sexuality optional.

If you don’t need it, don’t ask.

If you don’t know why you’re asking questions about someone’s gender, or if the information will not be used to benefit the user, then don’t ask.

Privacy

While gender and sexuality are not considered PII (personal identifiable information, protected by law), this information is sensitive and should be kept confidential. Let individuals know who will have access to that information and how the data will be protected.

These assurances are particularly important for the safety and trust of transgender people. Research shows that when asked to provide information about their identity, transgender individuals required much more information about the level of confidentiality of data before they would consider answering those questions. While some queer people are “out” and have made their identity public, others may be deeply concerned that they would face discrimination if their identity or experience was inadvertently revealed.

Safety

The confidentiality of gender and sexuality information is even more critical for queer people of certain cultures. There are parts of the world and cultures where discrimination against queer people is dangerous. Some countries block online search terms like ‘gay’ or ‘lesbian’. In other countries, being queer is condemned, criminalized, or even punishable by death. It is no wonder that some queer immigrants and refugees to the U.S. do not identify themselves as queer because the consequences could be dire in their home country or culture.

It is important to note that significant stigma, ostracization and violence against queer people still exist in certain communities of the U.S. too.

Consider your visual design.

When we consider queer inclusivity in our designs, we need to approach it from a perspective that protects people who may face significant consequences if their identities are revealed. Designers must carefully consider overtly queer-focused visual design (e.g., rainbows) and inclusive messaging with a sometimes-necessary covert experience.

Provide escape routes.

Some wellbeing organizations provide a quick and easy way to leave their website if someone feels that viewing the site is no longer safe. For example, if a person who feels unsafe revealing their identity is browsing the Trevor Project website – a crisis support resource for trans and queer young people – and their parent walks into the room, the young person can immediately and covertly close the website using keyboard shortcuts. The Trevor Projects communicates this option as soon as someone visits their site.

The Trevor Project

Listen, learn, and support.

Inclusive design is more than choosing words and components, but also empowering the people we aim to support throughout the design process itself. Talk directly with queer people from diverse backgrounds and experiences. Continually collect feedback as you maintain and iterate on your designs. When you can, enable and support queer people as they take the lead on finding and implementing solutions for the needs of their communities.

Queer-inclusive design isn’t easy. As society continues to evolve, we need to adapt our approach to design along with it. Understanding what needs to change cannot happen alone. Instead, we can turn to community experts, design leaders, and organizations who have already started evolving their inclusive design practices. More importantly, we can listen to the experiences and expertise of the queer community directly – and working together, adapt and implement inclusive best practices together. When we acknowledge, respect, and actively support queer people in our designs – for healthcare and beyond – we can make the world healthier and safer for everyone.

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