What Patients Want in a Transgender Center: Building a Patient-Centered Program

Abstract

Gender affirmation is standard medical care, and community input is an essential component of patient-centered care. This study shares how our organization assessed patients' perceptions of health care organizations that provide gender-affirming care. Building on qualitative interview data, we distributed an online survey via a lesbian-gaybisexual-transgender-queer research firm. The survey was completed by 314 transgender individuals residing in 37 U.S. states and territories. Most respondents (69%) reported negative experiences seeking health care. Patients would travel long distances for competent providers and were more willing to seek care from an institution actively working to change a formerly negative reputation. Patients described high-quality organizations as prioritizing staff training (95.5%), having inclusive policies (93.3%), and hiring expert staff (86.0%). Programs should ensure cultural competency training for all staff. They should recruit and retain providers skilled in transgender medicine, especially trans-identified providers. Patient experience and reputation in the community influence where patients seek care.

Transgender individuals have a gender identity that differs from their sex assigned at birth. Many will seek gender-affirming medical or surgical interventions to align their physical appearance with their gender identity. Gender-affirming care is now considered to be the standard of care for gender dysphoria and is supported by all major medical associations, including the American Medical Association, the American Academy of Pediatrics, the American College of Physicians, and the American Psychiatric Association.^1–4 Published clinical practice guidelines provide standards of care for the transgender population, and the most up-to-date clinical practice guidelines recommend access to gender-affirming medical and surgical treatments using an informed consent model.^5–7 Academic centers providing gender-affirming care are becoming more common, with several aiming to become centers of excellence.

Transgender patients frequently encounter discrimination and barriers to care in health care settings.^8–13 Studies describe encounters where the patient feels providers are ignorant of their health needs and insensitive to their gender identity.^14–18 The needs and expectations that the transgender population has of transgender centers is unknown; specifically, it is unknown how patients select a provider, how far they are willing to travel for care, or what they value most in a health care system. As a result, institutions do not know where to focus their limited resources to improve care for this community.

To provide high-quality, patient-centered care for transgender people, which we define as inclusive of both cultural competence and clinical excellence, more research is needed. The purpose of this study is to evaluate data from a diverse group of trans-gender patients to assess what they seek in a health care provider and organization, and to understand what they value and distrust in the system, with the hope of identifying opportunities to deliver more patient-centered transgender care.

Methods

Qualitative interviews

The Johns Hopkins Office of Diversity and Inclusion contracted with the consulting firm Matlock Advertising & Public Relations to learn about transgender patients' experiences with the health care system. Data from these interviews will be referred to as originating from "Source 1." In the summer of 2016, Matlock recruited volunteers for structured one-on-one interviews from two conferences sponsored by leading transgender organizations in Seattle (19 interviews at a conference with 1,000 attendees) and Indianapolis (15 interviews at a conference with 350 attendees). Limited demographic data were collected including age range and gender identity. Interviewees were assured that the information they provided would be kept confidential. This paper reports on data from free response questions asking interviewees: (1) to describe prior negative health care experiences, (2) to describe the qualities of a world-class provider of transgender care, (3) to list strategies to improve an institution's negative reputation, and (4) to offer advice if they were a hypothetical patient advisory board member for ways to improve transgender care at a health care institution. Data collection and analysis were limited to the small set of demographic variables that were collected.

Qualitative coding

One member of our research team (HH) reviewed all transcripts and applied codes to each distinct segment of text. Another investigator (JC) reviewed this preliminary set of codes and discussed them with the research team. We refined codes and developed a final set of themes, which were divided into provider factors, institutional factors, and respect for the transgender community. Representative quotations were selected for each theme and subtheme.

Quantitative survey

Using the data from Source 1, we designed a 23-question quantitative survey about patient values and preferences. Domains of the survey instrument included prior negative health care experiences, factors most important in selecting a provider, whether and how patients research providers before making an appointment, and how far patients would be willing to travel for care. To understand factors that determine whether patients will seek care at a given institution, three case scenarios of hypothetical health care institutions were presented. On a five-point scale from highly unlikely to highly likely, participants were asked to rate their likelihood to seek care at that institution for either transgender-related health care or non-transgender related health care. See supplementary Appendix SA1 for the complete survey, available upon request.

Survey administration

Community Marketing & Insights (CMI), an outside market research firm that specializes in the lesbian, gay, bisexual, transgender, queer (LGBTQ) community, was hired to administer the online survey to a substantial group of trans-gender individuals while maintaining the anonymity of the sponsoring organization. Community Marketing & Insights is an LGBTQ-owned and operated research firm that maintains a voluntary panel of LGBTQ individuals for the purpose of inviting them to take part in related research projects. When participants sign up for the research panel, they give consent for their information to be maintained on the research panel database and to receive email invitations for survey-based research projects. Community Marketing & Insights sent an email briefly explaining the study to their entire membership and asked those who wanted to participate to respond. The survey was sent those who responded. A single qualifying question first asked whether the respondent identified as transgender; those who did were given access to the full survey.

Participation in the CMI panel and surveys is voluntary and anonymous. When CMI works with outside institutions, this is clearly stated in the research invitation, and panel members may opt out of these (or any) projects. Limited demographic information was collected—including age, region of the country, gender identity, and insurance status—and responses were not mandatory. Respondents were free to select multiple responses for gender identity and insurance status. The survey was administered during the summer of 2016. This dataset was originally collected to inform quality improvement for marketing purposes. Data from the online survey will be referred to as originating from "Source 2."

Inclusion criteria

To qualify for access to the survey, respondents had to self-identify as transgender by selecting at least one of the following to describe their gender identity: transgender, transgender male to female, transgender female to male, or Intersex. Qualifying individuals were offered a $10 gift card for their participation.

Ethics

The study team reviewed the Declaration of Helsinki as revised in 2013 and believe all procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. As noted above, each participant provided consent to participate in the interview or questionnaire. Participants were assured their data would be kept confidential and would be deidentified. All data were kept on password-protected, secure Johns Hopkins servers. The Johns Hopkins Medicine Institutional Review Board approved analysis of the deidentified data as a retrospective study.

Analysis

In the analysis, we combined "likely" and "highly likely" responses and similarly "unlikely" and "highly unlikely." We used a Pearson correlation matrix to understand the relationship between a history of negative experiences, whether respondents consider a provider or institution's reputation for transgender care when selecting a provider, and their willingness to travel for health care. For subgroup analysis, we collapsed gender identity responses into three non-overlapping categories: nonbinary (including "nonbinary," "genderqueer," and "gender fluid"), transfeminine (including "transgender male to female" and respondents who selected both "transgender" and "female"), and transmasculine (including "transgender female to male" and respondents who selected both "transgender" and "male"). Responses that included both a nonbinary category and a transfeminine or transmasculine category were designated nonbinary for the purposes of the analysis. Participants who selected "transgender" as a gender identity with no additional identities chosen were excluded from the subgroup analysis and regression.

We performed logistic regression to examine the relationship between gender identity and the types of negative health care experiences respondents had experienced, while holding insurance coverage constant. Age and region of the country were unlinked from the primary dataset to ensure anonymity, and therefore were not included in the regression. Analysis was done using SPSS, version 25¹⁹ for the calculation of means, frequencies, and t-tests for the statistical significance of differences between means.

Results

Interview results

(Source #1) Interviewee demographics are listed in Table 1. Below we discuss themes related to being a world-class provider of transgender health care, advice to improve transgender care, and how to improve a negative institutional reputation. See Box 1 for a complete set of themes with supportive quotations.

Provider factors

In interviews from Source #1, a world-class provider of transgender health care was described as someone who is trained, culturally competent, skilled, and trans-identified. On the importance of training: "World-class health care starts with small details. Wording on forms and interaction with front office staff." Another interviewee shared, "trans population is disproportionately poor, underemployed, and distrustful of medical establishments and starved for basic respect. If you are a clinician or administrator, you are going to bring your class assumptions to the table and that scares the trans community. Basic respect, empathy (not condescending or exclusionary). Train staff."

Interviewees described cultural competence as: "refer[ring] to transgender people in ways they chose. Intentionally using chosen names and pronouns instead of legal name, in the event the two don't align." And where cultural competence is absent, other biases are apparent: "I find if they are biased against transgender, they could be biased against the color of my skin." Regarding clinical skills, interviewees advised: "Use best

Table 1.

DEMOGRAPHICS OF INTERVIEWEES, N=34 (SOURCE #1)^A

evidence-based practices," and "Increase knowledge of trans care and emphasizing the necessity of a respectful environment." Interviewees placed a high value on receiving care from providers who are trans-identified themselves: "A health care provider that hires trans people; not using cisgender as experts." As a way for a health system to move in this direction, one respondent suggested: "Give scholarships to transgender students."

Institutional factors

Regarding institutional factors, interviewees described a welcoming clinical environment at an organization that uses an informed consent model, offers multidisciplinary care, and enacts supportive policies. To be welcoming, "Facilities should be transgender-friendly. Applications and forms should be transgender-friendly." They also spoke about visible signs in the clinic setting that would indicate a welcoming environment: "Images in advertising. Trans-specific advertising," and "Develops ads for transgender community." The theme of informed consent surfaced frequently: "No gatekeeping; no psychological evaluations," and "It should be an informed consent model. A one-stop shop, gender-affirming and client-driven … No requirement, but available mental health therapy and psychiatric care."

On the multidisciplinary nature of transgender care, interviewees spoke to the need for "holistically/comprehensive services" and that "all health care would be centralized." For example, interviewees stated "There would be availability to all trans-related specialties in one building, no need to go across town or to another city/state to get services." Institutional policies also play a role in what patients look for: "… hospital made it clear that no patient would be discriminated against in gender identity or preference. Develop and form with World Professional Association for Transgender Health (WPATH) guidelines."

Respect for transgender community

Interviewees described an organization that respects the transgender community by viewing patients as experts, becoming involved in the community, and soliciting patient feedback. On considering the patient as an expert, an interviewee said: "Just accept the Trans-experienced—no need to deconstruct, judge, impose, or value," "Make sure everyone is accepted; make sure their voice is heard and their needs met," and "Be respectful and listen to the community (transgender)."

Interviewees advised that organizations should become involved in the community: "Put forth an effort to learn about trans culture; invest in the effort," and "Make connections with the trans community, rely on their support, financially compensate them." Interviewees emphasized that organizations should be constantly working to improve by soliciting patient feedback: "Create panels or focus groups of patients/clients to give feedback," and "They need to solicit patient feedback. How are we doing?" See Box 1 for a description of the above themes with representative quotations.

Survey results

(Source #2) Respondent demographics. Over a thousand (1,057) individuals received a survey invitation from Source #2 and self-identified as lesbian, gay, bisexual, transgender or queer. Of these, 314 transgender individuals completed the survey which would yield a response rate of 29.7%. As it is not known how many survey recipients identified as transgender, the true response rate is likely higher. Table 2 presents respondent demographics and health insurance information.

Provider reputation / Willingness to travel

To receive health care from a provider who is known to embrace affirming and supportive transgender medicine, a large majority of respondents (83.4%, 262/314) would be willing to travel out of their local area. Of those who would be willing to travel, 33.3% (87) would travel up to 50 miles; 19.5% (51) up to 100 miles; 6.5% (17) up to 200 miles; and 8.8% (23) would travel more than 200 miles (percentages calculated based on 261 valid responses). A large majority of respondents (91.4%; 287/314) would be willing to travel to receive health care services from a provider who they know has specialized expertise in transgender medicine. Of those who would be willing to travel, 20.3% (58) would travel up to 50 miles; 24.8% (71) up to 100 miles; 8.4% (24) up to 200 miles; and 27.3% (78) more than 200 miles (percentages calculated based on 286 valid responses). More respondents were willing to travel to receive services from a provider with specialized expertise in transgender medicine (91.4%) than from a provider who embraces affirming and supportive trans-gender care (83.4%), p=.004.

Informed consent model

Almost one-third (29.3%; 92) of respondents would be unwilling to seek care at an institution requiring on-site medical or psychological/psychiatric evaluations or clearances for transgender-related care; 48.0% (151) would still be willing to seek care at that institution.

Institutional reputation

An overwhelming majority of 96.2% (302) agreed or strongly agreed that when they selected a health care provider for transgender-related services,

Box 1. QUALITATIVE THEMES FROM ONE ON ONE INTERVIEWS (SOURCE #1)

Table 2.

DEMOGRAPHICS OF SURVEY RESPONDENTS, N=314 VALID RESPONSES, YEAR 2016

they consider the organization's reputation. When selecting a health care provider for non-transgender related services, 83.8% (263) agreed or strongly agreed that they would still consider that organization's reputation for how it views transgender people as well as the provision of transgender medicine.

Respondents indicated their likelihood of seeking care at a hypothetical institution as follows:

(1) Scenario 1: A health care institution is known for high-quality general care and has an excellent reputation for transgender medicine and transgender community support. A large majority (90.1%, 283) of respondents would be likely to choose that health care institution for non-transgender-related health care, and 98.1% (308) for transgender-related health care.

(2) Scenario 2: A health care institution is known for high-quality general care, but has a negative reputation for transgender medicine, its views of transgender people, or reputation in the transgender community. Few respondents would be likely to choose that institution for non-transgender-related care or transgender-related care (both 5.7%, 18).

(3) Scenario 3: A health care institution is known for high-quality general care, but has a negative reputation for transgender medicine, its views of transgender people or reputation in the transgender community; however, it is actively trying to change that negative reputation. Over one-quarter (27.7%, 87) responded they would be likely to choose that institution for non-transgender related care and 21.3% (67) for transgenderrelated care. See Figure 1 for details of each scenario.

Figure 2 shows how institutions known for high-quality medical care can improve a negative reputation for transgender medicine or its views of transgender people and perhaps attract respondents as patients over time.

Negative health care experiences

Figure 3 shows negative experiences seeking health care related to being transgender. A majority (69.4%; 218) of respondents reported personal negative experiences; a slightly larger percentage (74.2%; 233) reported that a friend or loved one had a negative health care experience. Notably, the most frequent responses all relate to staff being uninformed or not transgender-friendly. Respondents considered changing health care providers based on negative health care experiences of their own (83.4%; 262) or of a friend/loved one (77.4%; 243).

Researching health care providers

Most respondents, 90.1% (283) reported that they had researched health care providers to determine the provider's transgender medicine expertise or reputation in the transgender community. Almost all (94.3%, 296) planned to do similar research in the future. See Figure 4 for a complete ranking of sources respondents used for this research.

Over one-third of respondents (36.3%; 114) reported using the Human Rights Campaign (HRC) score to research health care providers.²⁰ Respondents who used HRC scores to research the reputation of health care providers reported fewer negative health care experiences than respondents who did not use HRC scores. Paperwork issues (HRC 29.8% vs. non-HRC 43.5%; p<.05) and doctors not being informed about transgender care or not being transgender-friendly (HRC 36.0% vs. non-HRC 48.7%; p<.05) both occurred less often in this group. There was no difference in the rates of other negative health care experiences in HRC vs. non-HRC users. There was no difference in the rates of other negative health care experiences in those who used the HRC score versus those who did not.

Correlation matrix

There was a moderate correlation among negative experiences when seeking health care, indicating that participants who reported at least one type of negative experience were likely to have had multiple types of negative experiences. Each type of negative experience was correlated with all other types of negative experiences.

Figure 1.

Likelihood of choosing a health care institution (known for high quality care) based on reputation for transgender medicine. 314 valid responses.

Figure 2.

Most impactful steps to improve a negative reputation and perhaps attract participant as a patient over time. 314 valid responses.

The strength of the correlations ranged from 0.197–0.644 (higher numbers indicating stronger associations). All correlations were significant at a level of p < .01. Reporting a history of negative prior experiences was not correlated with willingness to travel for care.

Taking into consideration a provider's reputation for providing non-transgenderrelated care was associated with greater willingness to travel for gender-affirming care (0.217; p<.01) and for skilled transgender care (0.155; p<.01). Similarly, considering a provider's reputation for providing transgender-related care was also associated with greater willingness to travel for gender-affirming care (0.118; p<.05) and skilled gender care (0.164; p<.01).

Gender identity subgroup analysis

In the non-overlapping gender identity categories (described above), there were 82 nonbinary, 125 transfeminine, and 99 transmasculine respondents. Eight respondents selected "transgender" with no additional identity selected, and these were excluded from subgroup analysis. Transmasculine respondents were more willing than transfeminine or nonbinary respondents to travel to receive care from a provider known to embrace affirming and supportive transgender medicine (mean of a five-point Likert scale: transmasculine 4.39 vs. transfeminine 4.20, p<.05; transmasculine 4.39 vs. nonbinary 4.13, p<.05). Transmasculine respondents were also more willing to travel for a provider who they know has specialized expertise in transgender medicine (transmasculine 4.68 vs. transfeminine 4.52, p<.05; transmasculine 4.68 vs. nonbinary 4.51, p<.05).

Nonbinary and transmasculine respondents more strongly agreed with the statement

Figure 3.

Frequency of negative health care experiences related to being transgender. Participants were able to choose multiple responses.

Figure 4.

Valuable sources to research the transgender medicine reputation as a health care provider. 307 valid responses.

"I have had negative experiences related to being a person who identifies as transgender in seeking my own health care" than transfeminine respondents (mean of a five-point Likert scale: nonbinary 3.94 vs. transfeminine 3.41, p<.05; transmasculine 4.02 vs. transfeminine 3.41, p<.05). Only for the area of negative verbal behavior were the experiences of nonbinary, transmasculine, and transfeminine respondents roughly equal. Compared with those identifying as transfeminine, one or both of nonbinary and transmasculine respondents reported more: negative non-verbal behavior; paperwork issues; procedures not being covered; facilities not being conveniently located; and administrative staff, nurses/technicians, and doctors not being sufficiently informed about transgender issues. These differences persisted when logistic regression was used to control for differences in insurance coverage among gender identity subgroups.

A large proportion of all subgroups reported researching the reputation of an organization when selecting a health care provider (nonbinary 84.1%, transmasculine 94.9%, transfeminine 89.6%). To assess the reputation of an organization, transfeminine respondents more commonly reported using Human Rights Campaign (HRC) scores than other subgroups (transfeminine 45.6% vs. nonbinary 31.7%, p<.05; vs. transmasculine 28.3%, p<.05). All subgroups used recommendations from friends or family, though transfeminine respondents used this method less often than nonbinary respondents (transfeminine 72.8% vs. nonbinary 85.4%, p<.05; transmasculine 82.8%). There was no significant difference in use of other sources by subgroup.

Discussion

Patient-centered, gender-affirming care is considered standard in contemporary medicine. Yet transgender individuals struggle to find institutions achieving these goals and consistently report limited access to care and concerns about health care quality. ^11,16,21,22 Conversely, health care institutions are unsure where to focus limited resources to improve care for this community. Prior research suggests transgender patients face barriers to accessing health care including providers' inadequate knowledge of transgender health issues and lack of cultural or clinical competency.^16–18,23 Studies also emphasize the need for transgender-identified and trans-sensitive staff.^8,16–18,24

As many know, Johns Hopkins has a challenging history with its department of psychiatry historically opposing gender-affirming care. In recent years, the institution has embraced modern medicine's view of transgender care and worked to enact supportive policies and build a comprehensive gender-affirming care program. Recognizing that Johns Hopkins' institutional history could be a barrier to patients seeking medical care, we undertook to ask transgender people what matters most to them as they seek health care services in order to incorporate the values and preferences of patients into an institutional redesign.²⁵ We believe that other academic institutions wishing to become leaders in gender-affirming care may also need to explore their institutional history and believe the findings of this study are generalizable to other institutions.

Given the history of denial of care and outright discrimination against transgender people in health care settings, it is unsurprising that they consider a provider's reputation when seeking care. Yet the authors were interested that—of those who are willing to travel for skilled transgender care—over one-quarter would be willing to travel 200 miles or more to see a provider who is skilled in transgender medicine. This high number reflects the urgency and necessity of gender-affirming care, as well as the dearth of skilled providers.

While telehealth has become pervasive since the emergence of the COVID-19 pandemic, it was not widely used when these data were collected; it has since been identified as a way to provide gender-affirming care to patients who would otherwise have to travel long distances to see a qualified specialist.²⁶ In a 2021 U.S. survey on national trends in telehealth use, transgender individuals were three times as likely to have used video-enabled telehealth compared with cisgender individuals, highlighting ongoing problems with access to competent, gender-affirming care in many locales.²⁷ Telehealth may be beneficial for this group in many ways: a survey of 108 transgender people living in Italy found significantly better mental health scores in those who had access to endocrine care via telehealth compared with those who did not.²⁸

Despite these promising findings, access to telehealth care is not guaranteed in the United States. Interstate telehealth care was facilitated in the early part of the pandemic with some states waiving in-state licensure requirements. Many states have since retracted these waivers or limited waivers to existing, not new, patient appointments.^29,30 This shifting landscape makes it difficult for patients to be certain about continued access to gender-affirming telehealth. Furthermore, though telehealth has many benefits, it does not afford the same degree of relationship-building or care as in-person health care.³¹ Thus, we believe our findings about patients' willingness to travel for care has ongoing relevance to the future of transgender medicine.

Respondents (Source #2) were slightly more willing to travel to see a provider who is skilled in transgender medicine than to see one who has an affirming attitude. While in practice, there is likely significant overlap between providers who are skilled in trans-gender care and those who are affirming, we sought to assess whether patients placed a higher value on clinical or cultural competency. We take these results to mean that while ensuring adequate cultural training of all staff members is critical, institutions should also encourage providers to bolster their physiologic knowledge and skills to care for transgender patients.

An institution's reputation also influences where respondents choose to seek care. Because respondents were more likely to go to an institution that is actively working to change its negative reputation than to one not making similar efforts, we are optimistic that previously problematic institutions that invest in expanding and improving care for transgender people will ultimately be able to attract these patients over time. As one-third of respondents would be unwilling to seek care at an institution that required on-site medical or psychiatric clearance, institutions should consider an informed-consent practice model to attract future patients, as recommended by the current international standards of care.⁵ Indeed, informed-consent care is common among institutions that provide gender-affirming hormone therapy.³²

As others have reported, we found most respondents have had negative experiences seeking health care related to being transgender,²⁰ which have led many to consider changing health care providers. While nonbinary and transmasculine respondents reported more negative experiences than transfeminine respondents—and while all groups researched providers at similar rates—it is notable that transfeminine respondents more frequently used Human Rights Campaign (HRC) scores in their research. Overall, respondents who used HRC scores to research providers reported fewer negative health care experiences, indicating that this may be an effective resource for patients to assess potential providers.

The qualitative work (Source #1) confirms the above findings and adds further nuance and richness to our understanding of what transgender people seek in a health care provider and institution. Representation is a common theme in the qualitative data—interviewees place a high value on trans-identified providers, on institutions that invest in the transgender community and enact supportive policies, and on institutions that actively seek feedback from their transgender patients and the larger community. Institutions that wish to become leaders in transgender care should consider recruiting trans-identified people at all levels and examine their internal policies to ensure that the institution is a safe and desirable place for transgender people to work.

Strengths and limitations

One strength of this study is the minimization of social desirability bias through the use of neutral third-party organizations (Matlock/Source #1 and CMI/Source #2) to conduct the data collection. The study also has a few important limitations. The initial interviews (Source #1) were conducted by a marketing agency, which may have affected how participants discussed their care. The agency limited demographic data collection to ensure acceptability and confidence among participants, which limited detailed sub-analysis. As has been noted concerning qualitative data,³³ although the themes were saturated, we may not have captured the diversity of feelings representative of the community.

The survey (Source #2) was distributed by an LGBTQ-owned and operated research firm. To ensure the anonymity of respondents, age and regional data were unlinked from the primary dataset, which prevented additional analysis of these variables beyond summative reporting. Further demographic data including race/ethnicity, socioeconomic status, and disability status were not collected from either group which limits the generalizability of these results. Being a member of multiple marginalized groups compounds the effects of discrimination and lack of access caused by each marginalized identity;³⁴ the omission of detailed demographic data means these data may not be broadly applicable.

Additionally, the data were collected in 2016, and at that time telehealth had not been widely adopted. Access to telehealth has changed the landscape for how patients seek care, as we discuss above.

Conclusions

Understanding the needs, values, and preferences of the transgender community is critical to providing patient-centered, gender-affirming care. We hope that the findings in this study can help guide health care institutions in building high-quality gender-affirming care programs and a positive reputation within the community. By listening to the needs and priorities of our patients, we can serve them, make amends for troubled pasts, and work towards a brighter future.