Queering Intake Form Design (and Other Onboarding Processes)
A genderqueer person sitting in a hospital gown sitting in an exam room, courtesy of Vice’s Gender Spectrum Collection
As a transgender nonbinary person and designer, I am so often struck by how experiences around me often overlook people like me in their design. Where this stands out most in my life is the intake experience in the medical setting. In my senior year of college, I decided to explore this issue in a Health Communication class in the following research proposal paper. While this may seem extremely niche, the lessons learned from this use case can be applied in a variety of onboarding and intake processes that record sexual orientation and gender identity (SOGI) data, from job application forms to profile settings, and even dating app user experiences. When designing welcoming experiences, it’s so important to think about inclusion, from the very first piece of paperwork or form.
Thank you to Dr. Roma Subramanian for guiding this research proposal and encouraging me to be an advocate for my own marginalized community members.
Queering the Intake Form: Affirming Nonbinary Identities in New Patient Paperwork
When a new patient first enters a doctor’s office, they are presented with paperwork- the intake form. The intake form serves a dual purpose: “to give the clinician relevant information, required in their role of promoting patient wellbeing” (Dahlen, 2020, p.46) and to garner information for insurance purposes (Hagen & Galupo, 2014, p.25). A prerequisite question that is asked to answer both needs is natal sex, or sex assigned at birth, often referred to in forms either as “sex” or “gender,” often conflating the two terms (Pye & Goins, 2013, p. 402). However, the intake form can serve a third purpose, to include or discriminate. For nonbinary patients who do not identify as either “male” or “female,” the healthcare experience is already fraught. A significant number of transgender individuals have experienced harassment, discrimination and violence in healthcare settings (Grant et. al, 2010, pp.5-6). But even when there is not intentional harassment, discrimination, and violence, the “male or female” question represents a hegemonic gender binary worldview enshrined in institutional language and rooted in medicalism. It is an often overlooked piece of health communication that can lead to dysphoric and uncomfortable experiences for nonbinary patients (Pye & Goins, 2013, pp. 402-403). If a healthcare provider reads an intake form that only let the patient provide their natal sex and legal name, the provider might then assume the patient is cisgender and then go on to misgender– the term for using “the wrong pronouns or other gender-specific words when referring to or speaking to someone, especially a transgender person” (Meaning of misgender in English, Cambridge Dictionary)– the patient throughout the interaction, causing distress. The intake form can be analyzed for signs of whether an institution has had these discussions or whether it remains rooted in exclusionary and binary gender worldviews (Pye & Goins, 2013, p. 399).
Literature Review
The Existence of Nonbinary Patients
Not all patients identify as male or female, or within the “gender binary” which is defined as “the classification of gender into two discrete categories of male and female” (American Psychological Association, 2018). While intake forms often conflate these terms (Pye & Goins, 2013, p. 402), it is important to note the distinctions between these categorizations. “Sex” is a “biological variable” (Miller, et. al, 2014, p.194); it is “a narrowly defined term defining living things as male and female based on the complement of sex chromosomes and the presence of reproductive organs” (Miller, et. al, 2014, p.195). Meanwhile, “gender” is a “cultural variable” (Miller, et. al, 2014, p.194), defined as “a complex psychosocial construct that takes into account [not only] biology but also the influences of society and environment” (Miller, et. al, 2014, p.195). When we discuss patients who do not identify as male or female, we are discussing gender identity, not sex.
Patients who do not identify as male or female can be described as (but are not limited to the following terms) gender-nonconforming, nonbinary, genderqueer, genderfluid, agender, or two-spirit. For the purposes of this proposal, the tern nonbinary will be used. The term “nonbinary” functions as “an umbrella term that encompasses any gender identity outside of the binary construct of girl/woman or boy/man” (Goldhammer et. al, 2018, p.559). While not all nonbinary people identify as transgender, nonbinary is often understood as a transgender identity. Transgender is a descriptor for those who “have a gender identity that differs from the sex they were assigned at birth” (Meerjiwk & Sevelius, 2017, p.e1). However, while nonbinary is often considered a subset under the “transgender” umbrella term and those who identify as nonbinary are often categorized as transgender in research, there is a likelihood that there are far more individuals who identify as nonbinary and not exclusively as transgender, thus falling into invisible territory in research– however, according to research, there may be twice as many individuals who identify as nonbinary than individuals who identify as transgender (Meerjiwk & Sevelius, 2017, p.e6).
The Gender Binary in Healthcare
Why the insistence on the dichotomous “male” and “female” gender binary? Bioethicist Sara Dahlen observes that “the language of sex in medicine reflects the process of human (mammalian) sexual reproduction” (Dahlen, 2020, p.39). The gender binary is also enshrined in the language of different aspects of the medical experience, including the language of insurance companies (Hagen & Galupo, 2014, p.24), medical privacy law (Funk et. al, 2019, p.141,), and more. “Reified through Western culture (and exemplified through popular media), reinforced by medical practices, and policed by the legal system, the gender binary present in the United States health-care system operates as, arguably, the single most effective ideological state apparatus” (Funk et. al, 2019, pp.119-120).
Sex differences are also a factor in much medical research and practice. There are documented and observable differences between the bodies of biological female-sexed and male-sexed patients which has implications for medical practice in a variety of ways (Dahlen, 2020, p.46). However, others argue that because many other factors besides natal sex affect how the body processes and reacts to medicine (here, referring to drugs and medications administered in healthcare settings), natal sex should be irrelevant to most providers (Funk et. al, 2019, pp.133-141).
The gender binary is also reinforced by electronic health records (EHR). EHRs do not tend to collect thorough sexual orientation or gender identity information (SOGI), rendering gender minorities, especially nonbinary individuals, invisible to the eye of the medical institution and researchers compiling data from EHRs. Neglecting to inquire after patients’ SOGI not only impacts research but also hinders “recognition of LGBTIQQ patients and their unique health needs, rendering quality, personalized care impossible” (Callahan et. al, 2014, p.49).
Negative Healthcare Experiences
This systematization of binary-centric gendered language in healthcare often results in negative healthcare experiences for nonbinary patients. The process of misgendering (communication to or about an individual while using a wrong gender identity) begins with their very first experience in the healthcare provider’s office: the intake form. Asking a nonbinary patient to select “male” or “female” when their very identity does not align with either term “can be anxiety-producing, emotionally painful, or politically problematic” (Pye & Goins, 2013, pp. 402-403). The stress and anxiety caused by the experience or even the apprehension of being misgendered can take away from the healthcare experience as a whole. In a study, it was only when nonbinary individuals felt that “their provider truly sees [sic] them as their correct gender, the trans ∗ -identified participants in this study felt they are able to focus solely on their health” (Hagen & Galupo, 2014, p.28).
Transgender individuals already tend to have negative experiences in healthcare. In a national survey by the National Center for Transgender Equality and the National Gay and Lesbian Task Force, 19% of respondents reported being refused care due to being transgender, 28% reported being verbally harassed in a medical setting, and 2% reported being physically attacked in a doctor’s office (Grant et. al, 2010, pp.5-6).
Even when transgender individuals do not experience explicit discrimination or harassment, a lack of cultural competence can manifest as less than excellent care and communication. “Frequently, opportunities for primary or preventive care (which would be standard of care in a ‘cis’ patient) are missed in the transgender population, partly due to the provider preoccupation with a patient’s transgender status or use of hormone therapy; this has been termed the ‘Transgender Broken Arm Syndrome’” (Mikdachi & Mann, 2018, p.58).
Setting the Tone
Inclusive gender identity questions can help set the tone for nonbinary patients. Nonbinary patients tend to go into medical settings with the expectation of being misgendered, ridiculed, questioned, and critiqued- much less have a spot on intake forms (Hagen & Galupo, 2014, p.26). When nonbinary patients see inclusive gender options on intake forms, they tend to feel more respected and safe in that healthcare setting (Hagen & Galupo, 2014, p.30).
How Inclusive is Inclusive?
Even when intake forms expand beyond the gender binary, they often fall short of inclusivity. When offering options besides “male” or “female,” forms often only provide “transgender” or “other” (Hagen & Galupo, 2014, p.23). Not only does this literally “otherize” gender minorities who do not identify with these terms, but it also erases transgender individuals who identify within the gender binary. “Transgender” is not a gender in and of itself, but instead an additional descriptor. A transgender woman would identify as a woman (if prompted with a gender identity question, not a natal sex question).
The process of categorizing identities is also arguably antithetical to some queer theory and even some of the experiences of patients who experience gender fluidity. Gender fluidity refers to individuals for whom gender identity is not a fixed state but can shift and remains in flux (Eckstrand et. al, 2016, p.1108). Some argue that “formal categorization reifies the legitimacy of one type of identity while simultaneously determining others as illegitimate; formal categorization also ignores the fluid and overlapping nature of identity labels” (Pye & Goins, 2013, pp. 404-405).
The Two-Step Question
An alternative has arisen to the “male” or “female” question on intake forms. In order to solve for the difficulty caused by conflating sex and gender, the two-step sex and gender question has been created as a means of soliciting natal sex for the means of insurance and medical information-gathering while also providing validation of a patient’s gender identity. The two-step question is effective, resulting in “near-zero missing data” and “a transgender-spectrum response rate twice that elicited by a single question that asked respondents to select from four response options for their sex (male, female, transgender, other)” (Cahill et. al, 2014, p.6).
The two-step question varies slightly from form to form but remains essentially the same. The first part asks, “What sex were you assigned at birth on your original birth certificate?” The second asks “What is your current gender identity” (Rullo et. al, 2018, p.3793). It is highly recommended to follow this two-step question by asking for the patient’s preferred name and pronouns (Goldhammer et. al, 2018, p.561; Fuzzell et. al, 2015, p.1470; Laoch & Holmes, 2018, p.202; Rullo et. al, 2018, pp.3793-3794).
Cultural Competence
Even if the language of medical intake forms were expanded to include more inclusive options for nonbinary individuals, a lack of cultural competence in the staff of the healthcare setting can still lead to misgendering and a negative healthcare experience. Healthcare providers who are unfamiliar with the concepts of transgender and nonbinary gender identity often rely heavily on their patients for education (Hagen & Galupo, 2014, p.17). This creates an unnecessary burden on the patient whose job is not to educate, but to receive care.
In one study, patients described how even when they provided their gender identities via an intake form, staff neglected to read the form or ignored their input (Hagen & Galupo, 2014, p.24), or made assumptions about the patients even after reading their forms (Hagen & Galupo, 2014, p.23). Staff should not only make a good-faith effort to read intake forms and adopt the usage of the proper names and pronouns but should also extend inclusive language practices to situations like discussing anatomy (Goldhammer et. al, 2018, p.561). Gender is extremely interwoven in language in ways we may not usually take note of, for example, “women’s reproductive health” (Hagen & Galupo, 2014, pp.19-20). It can be difficult to “neutralize” language or get into a habit of using non-gendered language. Instead of assuming, providers should take time to discuss with their patients what kind of language they would like their providers to use or not use (Hagen & Galupo, 2014, p.30).
Developing an inclusive healthcare experience also relies on more than the written or spoken word. Patients need visual markers, “inclusive signs in the office environment that conveyed a safe place to disclose orientation or gender identity, including ‘Safe Zone,’ Human Rights Campaign signs, or rainbow stickers, as well as sexual health pamphlets geared toward sexual minorities” (Fuzzell et. al, 2015, p.1470). Providers must also “be aware of what their body language might be communicating to the patient or what gender dynamics they may be enacting” (Hagen & Galupo, 2014, p.32).
Disclosure and Privacy Concerns
Even if solicited, transgender and nonbinary patients may still be hesitant to disclose their gender identities to healthcare providers. This is because disclosure of trans and nonbinary gender identities can open patients up to discrimination (especially in states without sufficient protections), denial of service, harm and violence, (Funk et. al, 2019, p.143; Rullo et. al, 2018, pp.3791-3792).
Patients must have autonomy to choose whether or not to reveal SOGI information (Callahan et. al, 2014, p.50). If the healthcare provider does not provide services that are unrelated to sex organs, for example, an ear-nose-throat doctor, they should be reminded that they do not have to disclose that information if they do not wish to do so (Funk et. al, 2019, p.135). It can also be helpful if the intake form includes the institution’s anti-discrimination policies, if they have any (Rullo et. al, 2018, p.3805).
Medical privacy law is complicated in that it “assumes that all individuals are men or women, that all such individuals are unambiguously so, with anatomical traits all uniformly indicative of one binary sex or the other, and that an individual’s sex (and gender) is readily apparent and never a matter of personal privacy” (Funk et. al, 2019, p.141). For nonbinary patients who sometimes do not conform aesthetically to binary gender standards, this becomes increasingly complicated. Those who are more likely to be “perceived” as LGBTQIA+ are at higher risk of discrimination, harassment and violence (Callahan et. al, 2014, p.49). Nonbinary individuals who cannot “pass” or be perceived as belonging to a gender binary, are more at risk of harassment than even binary transgender individuals who “pass” (Kattari, 2016).
Rationale
It seems apparent that there exists enough existing research and best practices with which to create a seemingly ideal intake form. However, much of this research has been done from a suboptimal starting point– the intake form that can’t even differentiate between sex and gender. What issues may arise even after an ideal intake form has been created? What obstacles remain in terms of institutional adoption and indeed, even patient response, disclosure and completion by nonbinary patients? While the research shows that there is a model for effective and affirming intake forms, there seems to be no study that asks both patients and providers to evaluate a sample intake form (created using existing research and best practices) and respond according to their needs. This approach would recognize the needs of both the providers and the patients, anticipate and prepare for resistance or obstacles, and further work towards queering the intake process and making the new patient onboarding process equitable for all.
Method
Research Questions
The sample intake form will be created using all of the aforementioned best practices, including sections of anti-discrimination policies, definitions of terminology, and explanations of why certain kinds of information are being requested. Because there is already research around transgender binary populations in healthcare settings and healthcare language is so focused on the gender binary, focusing on nonbinary populations will help add to the body of work around nonbinary individuals in healthcare communication.
RQ1: What are the primary reasons providers resist or experience reluctance in changing intake forms to be inclusive of nonbinary/transgender identities?
RQ2: What are the primary reasons nonbinary individuals would still choose not to disclose on their intake forms, even after the forms have been updated for best gender-affirming practices?
Participants
Participants in the provider group will be recruited by sharing an explanation of the study with local clinics, general practitioners' offices, and hospitals in the Omaha area which would be found and contacted using office information on Google Maps. Participants in the nonbinary patient group would be recruited via snowball sampling due to the difficulty of recruiting such a group by random means. Snowball sampling has its roots in contact tracing and is particularly useful for identifying and recruiting individuals who belong to stigmatized and marginalized communities (Sadler et. al, 2010, pp.369-370). Snowball sampling can be improved by utilizing community spaces, both physical and digital, to disseminate information about the study (Sadler et al., 2010, p.373). Examples of community spaces for nonbinary patients would be support groups for transgender individuals (whether physical or digital), “meme” groups on Facebook (and meme accounts on other platforms), LGBTQIA+-focused health clinic, social groups, etc.
While there has been discussion about whether a gold standard for a sample size of participants for interview-based qualitative research can truly be established, some experts have used their prior experience to recommend 20 participants per “analytically relevant participant ‘category’” and no more than 50 to keep the study manageable (Vasileiou et. al, 2018, p.2). The group of providers and the group of nonbinary patients would both be at least 20 per group but amount to no more than 50 combined.
Procedures
In-depth interviews will be conducted with the participants, due to the sensitive nature of the questions. Provider participants would be provided with a sample of the intake form and asked to respond to the differences between the intake form and the forms provided at their own practice, and whether or not (and why) they would implement (or support implementing) such changes. A set of questions will be asked (Table 1 below). Follow-up and probing will be allowed. For the nonbinary patient group, the interviews will also be conducted one on one, in person. The participants will be asked to review the sample intake form and respond to it, particularly the two-step gender question. A set of questions designed to elicit answers about disclosure and reluctance to complete the intake form will be asked (Table 1 below). All answers will be audio recorded with consent, transcribed verbatim, scrubbed of identifying information (a participant number will be substituted for participant names) and analyzed for themes. The interviews should be at least half an hour but for the sake of manageability (interviews take much time to be transcribed verbatim) and to respect the participants’ time, will be limited to an hour (Jamshed, 2014, p.87).
Table 1
Q1
How does the intake form at your practice ask for natal sex?
Q2
Does the intake form at your practice differentiate between sex and gender?
Q3
Does the intake form at your practice have a two-step gender and sex question?
Q4
Is knowing the natal sex of your patient important in how you decide on courses of treatment? Why or why not?
Q5
How does the sample intake form provided compare or contrast with the one at your practice?
Q6
Does the intake at your practice form ask about preferred names and pronouns?
Q7
What was your reaction to the sample intake form, particularly the two-step gender and sex question and the questions that ask for preferred names and pronouns?
Q8
If the intake form at your practice does not have a two-step gender and sex question, would you implement one or support implementing one? Why or why not?
Q9
Do you think such questions are useful? Why or why not?
Q10
Have you served any binary transgender patients (who identify as a man or a woman) that you know of? What was that experience like?
Q11
Have you served any nonbinary patients that you know of? What was that experience like?
Q12
Do you and the staff at your practice receive training on serving diverse patients, including LGBTQIA+ minorities?
Q13
Did you receive education on LGBTQIA+ patients while studying for your practice? If so, what was that experience like?
Q14
What would be some difficulties you would anticipate in trying to implement changes to the intake form in general?
Q15
What would be some difficulties you would anticipate in trying to implement changes to the intake form in regards to a two-step gender and sex question?
Q16
What would be some difficulties you would anticipate in trying to implement changes to the intake form in regards to a question that asks for preferred name and pronouns?
Table 2
Q1
Are you “out” to most people you know (including casual acquaintances) or to a limited number of people?
Q2
Do you have health insurance?
Q3
Where do you receive your medical care from?
Q4
How do you respond to the gender/sex question on intake forms usually?
Q5
What were your feelings when filling out the sample intake forms?
Q6
How did the sample intake form compare or contrast with other intake forms you have filled out in the past?
Q7
What would you change about the sample intake form?
Q8
What would influence your decision to disclose your true gender identity, preferred name and pronouns on a medical intake form?
Q9
What are your main concerns when it comes to disclosure of your gender identity in general?
Q10
What are your main concerns when it comes to disclosure of your gender identity when it comes to medical settings?
Q11
Do you think such questions are useful? Why or why not?
Q12
What have your previous experiences been like in medical settings when it comes to your gender identity?
Q13
What would you like to see practiced in medical settings when it comes to gender affirmation?
Q14
What do you think medical providers struggle with when working with nonbinary patients?
Q15
What do you wish medical providers knew about working with nonbinary patients?
Data Analysis
Content analysis will be used to analyze participant responses. Content analysis is “a research technique for making replicable and valid inferences from texts (or other meaningful matter) to the contexts of their use” (Krippendorf, 2004, p.18). The transcribed interviews will be analyzed for recurring themes which will be grouped into sub-groups to promote manageability. A second analyst working independently and without seeing the results will then also analyze the transcripts in order to produce intercoder reliability (Krippendorf, 2004, p.215). The results will then be shared with participants who can then validate or correct the analysts.
Limitations
In terms of the design, a major challenge that is likely to arise is how to design a sample intake form that would be compatible with the filing systems of most practices. Due to the widespread adoption of electronic health records, changing forms is no longer a matter of making new printed forms but now a digital challenge likely to involve coding and an understanding of information systems management.
Due to the sampling method and geographic area in which it will be conducted, it is highly likely that the sample group will not be representative of all ethnicities, socioeconomic statuses, and more. This will undoubtedly affect responses, for example, black transgender people are at higher risk than white transgender people for discrimination (Violence Against the Transgender Community in 2019, Human Rights Campaign, 2019) and those who are poor are less likely to have regular access to healthcare.
It will also likely be difficult to recruit participants who are willing to share their experiences, especially because not only are nonbinary people a minority but also it’s been discussed that a not insignificant number of transgender/nonbinary individuals have already had negative experieces with healthcare providers. Still, there are likely many nonbinary people who want to see research and change happen to make the waiting room and doctor’s office a safer, more welcoming place for all.
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