Instituting Sexual Orientation and Gender Identity Training and Documentation to Increase Inclusivity at a Pediatric Health System

Abstract

In this mixed-methods quality improvement project, we implemented and evaluated sexual orientation and gender identity (SOGI) form rollout in the electronic medical record. Families in our gender diversity program completed a baseline survey in 2017 (55/328 responded) and follow-up in 2020 (180/721 responded) to evaluate the frequency of affirmed name and pronoun use in the hospital. Survey feedback informed system-wide inclusivity efforts and training. SOGI was implemented in 2020 after 1,662 providers completed an online training and 11,090 team members completed gender and sexual orientation inclusivity training. We recommend similar trainings for health systems utilizing SOGI.

Introduction

There is a growing population of gender-diverse individuals (including those who identify as transgender) in the United States. Around 0.6% of adults¹ and 1.8% of youth² identify as transgender. Gender care centers around the world are seeing a rise in the number of people seeking gender-affirming care.^3,4 However, national surveys show that 33% of gender diverse adults have negative experiences in health care related to their gender identity and 23% did not seek health care due to fear of being mistreated.⁵ Less is known about the experience of gender-diverse youth and their families in health care.

The American Academy of Pediatrics,⁶ the Endocrine Society,⁷ and the American Psychological Association⁸ recommend gender-affirming care.⁹ Yet there remain significant gaps in best practices regarding employee training to create a gender-affirmative environment within a medical setting. Furthermore, little is known about incorporating sexual orientation and gender identity (SOGI) into the electronic medical record (EMR). The aim of this quality improvement project was to understand the baseline state of name and pronoun use at our institution and develop strategies for improvement based on findings.

Materials and Methods

Patient/family survey

In December 2017, we mailed baseline surveys to 328 families who had a clinic visit at the TRUE (Trust, Respect, Understand, Emerge) Center for Gender Diversity at Children's Hospital Colorado in the prior calendar year. Patients and/or their parents could complete the survey using a link to an online Research Electronic Data Capture (REDCap) survey.¹⁰ Items on the survey asked how many times they had received care at the gender diversity center or any of the 30 outpatient clinical departments at the primary campus in the last year. In addition, the survey collected information regarding participant visits to the hospital laboratory, radiology, and the emergency department, or if they had been admitted to an inpatient medical/surgical/psychiatric floor, had outpatient surgery, or were part of the hospital school-based program. Participants were then asked how frequently their affirmed name/pronoun was utilized (responses: most of the time, sometimes, rarely, never, and not applicable) at a number of points during the visit (responses: scheduling and checking in for an appointment; being seen by a medical assistant, nurse, or technician after check-in; or being seen by a doctor or advanced practice provider [APP]). Participants were also asked how important it is to them to be referred to by their affirmed name/pronoun (responses: very important, somewhat important, so-so, and not important). Finally, participants were asked to share any other good or bad experience in an open-ended question, in addition to a final question: “What do you want staff to know or learn?” In April 2020, 721 follow-up surveys were emailed to current families seen at the TRUE Center. The follow-up survey was identical to the baseline survey, except for updates regarding staffing changes (Table 1). Chi-squared or Fisher's exact tests were calculated to determine differences between the baseline and follow-up surveys and odds ratios were generated for outcomes of interest when n>1 in each cell. The original goal was 20% improvement in affirmed name/pronoun use.

Table 1.

Demographics of Patient/Family Survey Participants and Locations Seen

	Baseline survey (n=55)	Follow-up survey (n=180)	p
Survey was completed by			0.04
Patient	33 (60)	80 (44)
Parent	14 (25)	75 (42)
Together	8 (15)	25 (14)
Had a legal name change	17 (36)	78 (52)	0.06
Current residence			0.5
Colorado	44 (94)	143 (94)
Wyoming	2 (4)	2 (1)
Another state in the United States	1 (2)	6 (4)
Live outside the United States	0	1 (0.7)
Year of birth (baseline/follow-up)			0.3
1995–1999 (age 18–22/21–25)	10 (21)	13 (9)
2000–2004 (age 13–17/16–20)	27 (57)	97 (66)
2005–2009 (age 8–12/11–15)	7 (15)	32 (22)
2010–2014 (age 3–7/6–10)	3 (6)	6 (4)
Gender identity			0.2
Transgender female or female	10 (21)	48 (32)
Transgender male or male	34 (72)	91 (61)
Agender	0	1 (0.7)
Nonbinary	1 (2)	5 (3)
Gender nonconforming	1 (2)	0
Still figuring it out	1 (2)	5 (3)
Race			0.8
White	37 (79)	119 (80)
Black/African American	1 (2)	4 (3)
Asian	1 (2)	2 (1)
American Indian/Alaska Native	1 (2)	2 (1)
Native Hawaiian/Pacific Islander	0	0
More than one race	6 (13)	13 (9)
Unknown/do not want to answer	1 (2)	8 (5)
Ethnicity			0.6
Hispanic/Latino	8 (17)	20 (14)
Number of visits in prior 12 months			0.8
0	0 (0)	1 (0.7)
1–3	36 (71)	102 (69)
4–6	13 (25)	33 (22)
7–9	0	2 (1)
10 or more	2 (4)	10 (7)
Number of visits with a provider to discuss gender in the prior 12 months			<0.0001
1–3	46 (92)	117 (82)
4–6	34 (68)	22 (15)
7–9	0 (0)	1 (1)
10 or more	0 (0)	2 (2)
Visit in another outpatient clinic in prior 12 months	17 (33)	52 (34)	0.9
Other services			0.4
Outpatient laboratory	33 (65)	96 (62)
Radiology	12 (24)	19 (12)
Emergency department	3 (6)	8 (5)
Inpatient admission	1 (2)	5 (3)
Outpatient surgery	4 (8)	15 (10)
Hospital school program	0 (0)	4 (2.5)
Social work/family navigator	9 (18)	14 (9)
Importance of being referred to by the proper name/pronoun			0.2
Very important	21 (75)	57 (85)
Somewhat important	7 (25)	9 (13)
So-so	0 (0)	1 (1)
Not important	0 (0)	0 (0)

Values are given as n (%), ns are given as well as the % out of nonmissing data.

Study data were collected and managed using REDCap tools¹⁰ and analyzed using GraphPad Prism version 8.4.3 (San Diego, CA). The project was approved by the Hospital's Organizational Research Risk and Quality Improvement Review Panel (the approval board for quality improvement projects) and not by the IRB as it was not considered human subjects research.

Health system inclusivity efforts

A Gender Diversity Taskforce (GDTF) was formed in June 2017 to ensure inclusive care was being provided in response to the growing gender-diverse patient population. The taskforce had an executive sponsor and 21 members with a diverse array of roles at the hospital (family representative, physicians, nurses, administrators, patient family services, legal, social work, information technology, and human resources). The initial aims of the taskforce were to plan for EMR documentation updates, provide education for medical team members and health system staff, and create awareness around gender diversity at our organization.

The GDTF created an online LGBTQ+ training module entitled “Understanding Gender and Sexual Orientation,” which was required for all health system employees. The module included 14 interactive slides and a quiz at the end and took about 7–10 min to complete. The training included general information about LGBTQ+ individuals, terminology, a graphic reviewing difference between gender identity, gender expression, anatomy, and sexual orientation, videos of LGBTQ+ patients and team members sharing their experiences, and changes coming to the EMR.

SOGI form

The SOGI Epic^® form in the EMR was piloted in the TRUE Center in January 2018. SOGI includes fields to document the patient's sex assigned at birth, gender identity, pronouns, sexual orientation, and organ inventory. After the initial pilot, SOGI was launched in select departments and then system wide in 2020. All providers watched a 4.5-min training video, and we included a tip sheet and frequently asked question sheet accessible within the EMR.

Results

Patient/family baseline and follow-up surveys

The baseline survey was completed by 55 of 328 respondents (17%), and the follow-up survey by 180 of 721 respondents (25%). Results are in Table 1. Patients reported that being referred to by their affirmed name and pronoun was very important to 75% of participants at baseline and 85% at follow-up (p=0.2). Overall, there were few significant changes from baseline to follow-up in the frequency of appropriate name/pronoun use throughout the hospital campus (Table 2). There were significant improvements in the frequency of appropriate name/pronoun use in check-in (p<0.0001) and during medical assistant/nurse/technician (p=0.003) interactions in the TRUE Center. Participants had a free-text option to discuss their experiences around name and pronoun use at our hospital and provide feedback; selected responses are in Table 3.

Table 2.

Frequency of Patients Being Referred to by Their Affirmed Name and Pronouns “Most of the Time”

	Baseline survey (n=55)	Follow-up survey (n=180)	OR (95% CI)
Gender diversity center
Scheduling	45 (92)	125 (93)	1.2 (0.4–4.2)
Check-in	35 (73)	125 (94)	5.8 (2.3–15.0)***
MA, RN	40 (83)	129 (96)	5.2 (1.6–14.6)**
MD	46 (98)	132 (98)	0.96 (0.07–6.5)
Other clinics
Scheduling	18 (82)	49 (82)	0.99 (0.3–3.5)
Check-in	16 (73)	53 (88)	2.8 (0.8–9.5)
MA, RN or tech	15 (75)	51 (86)	2.1 (0.65–7.0)
MD, APP	19 (95)	53 (90)	0.46 (0.04–3.3)
Outpatient laboratory
Check-in	8 (73)	36 (86)	2.3 (0.5–10.4)
MA, RN or tech	22 (76)	75 (90)	2.98 (1.0–8.5)*
Radiology
Scheduling	4 (80)	9 (64)	0.45 (0.03–5.2)
Check-in	4 (80)	13 (87)	1.6 (0.09–16.6)
MA, RN or tech	3 (100)	14 (93)	0 (0.0–45)
Emergency department
Check-in	2 (67)	3 (43)	0.38 (0.02–4.9)
MA, RN or tech	2 (67)	5 (71)	1.3 (0.06–16.3)
MD	2 (67)	5 (71)	1.3 (0.06–16.3)
Outpatient surgery
Scheduling	3 (75)	12 (92)	4 (0.16–81)
MA, RN or tech	4 (100)	12 (92)	0 (0–29)
MD, APP	4 (100)	11 (92)	0 (0–29)

Values are given as n (%) and odds ratio (95% confidence interval). Percentages are out of nonmissing data. Odds are displayed as the odds of being referred to by the correct name/pronoun at follow-up versus baseline. MA, medical assistant; RN, registered nurse; tech, technician; MD, medical doctor; APP, advanced practice provider (nurse practitioner or physician assistant). ^*p<0.05, ^**p<0.01, ^***p<0.001.

Table 3.

Patient/Family Survey Free-Text Responses

	Baseline survey	Follow-up survey
Positive experiences	“Most of my experience with […] staff has been good.” “Our child always feels welcome.” “Sometimes they slip up on my name but they correct themselves right after and apologize. They're all very nice and I feel comfortable there.” “I was asked IF I wanted to share my experience, which is good because not everyone is comfortable sharing.”	“Removing the gender marker from the wrist bands has really helped.” “Children's has been wonderful to work with during this emotional and challenging transition” “LGBT staff sharing personal stories with me while discussing things like needles made the experience more comfortable” “Little things go a long way. For example, everyone in the TRUE clinic seems to have a rainbow lanyard for their badges. Those little things are saying, ‘I see you. I accept you.’” “All our experiences have been good. Everyone is open, honest, and willing to go the extra mile […] Thank you for being advocates for our youth.”
Negative experiences	“Check in clerk refused to find my child's preferred name, I had to give birth name.” “Since we haven't had a legal name change my child was called by their birth name and gender when we signed in as well as it was on his wrist band. Not what we were hoping for. It was our first appointment […] so nobody was sure what name pronouns we were using. Would be helpful to have that on the intake questionnaire so no mistakes are made like we had.” “Checking in with the ER, there was an issue with the gender marker: they could not find my information because they assumed my gender marker was female, and it made my admittance slow.” “Wrist bands do not communicate name and pronoun preference which possibly the MA is not aware of.” “When checking in I was deadnamed but after my mom corrected her I've never had a problem with it there.” “The person making the appt, and verifying the appt did great and found it under the correct name, but then the check in lady refused to. It stressed my son out, made me very upset when I know she could have done it correctly. It is critical that the preferred name and gender are given, it hurts my child to be as he calls it ‘dead named.’ They need to realize how important this is.” “Because of my body structure and genetics, I look masculine in general, so it is not difficult for someone to assume I am male by my appearance, which is a bit of a blessing. Unfortunately in a hospital setting however, the little wristband you receive at the beginning of any type of visit, displays an F for my gender, when in actuality it should be an M. I have, on multiple occasions, looked into and asked around to see if there was any possible way the hospital database could be updated to display the correct pronoun letter on all of my records, so that perhaps anyone who were to look at them would not be mistaken by my gender marker, and my conflicting appearance.”	“In pediatric surgery the two women at the front desk were eager and willing to learn; but required ALL the gender education. There were two nurses, an OT, anesthesiologist who were great! There were a couple nurses who couldn't get pronouns or name, it seemed intentional and they didn't respond to correction. The doctor just didn't use any pronouns, he seemed awkward—like did he not know why my kiddo was getting blockers reimplemented?” “I don't understand if you have been introduced to the child as he, and nothing else, how the she pronoun still finds it way in? Is it because of the chart? And why does that seep into the interaction? it happens a lot in the ER when we see lots of different nurses and techs.” “There was also an event that happened a few years ago, when I needed to make a gynecologist appointment for a BV infection, the operator was blatantly very confused and rude that I was trying to do this since I have a masculine voice but I assured her I have a uterus I'm just trans and she kept trying to direct me to the TRUE center instead.” “The nurse that brought us back to prep for the surgery asked my child questions—routine questions asked if she's had her period yet—I think this question should be omitted for our transgender kids—my child is male to female. She answered no and then the nurse mumbled something strange. It was an extremely awkward experience.”
Suggestions for improvement	“Man y'all always got the wrong name on that wristband thing. Once a nurse sharpied over it. That was cool.” “I may cringe a bit when someone gets it wrong, but it's not a big deal. Overcorrecting or apologizing just makes it more awkward, so it's not that big a deal.” “…is it possible to not put one's legal name on the wristband they're given?”	“Automatic texts, which always deadname me.” “Patience is key. It's okay to mess up. Just quickly apologies and move on. You've got this.” “Offer their own pronouns first/and on nametag. […] That asking loud questions about gender in an open waiting room IS a violation of HIPPA and some kids/parents would be outed and/or uncomfortable with this breach.” “To never assume someone's pronouns or gender identity based on looks. It would be nice if staff modeled their pronouns.” “I see my child's confidence decline immediately when she is called by her birth name.” “Using words like ‘pretty or handsome’ can come off very gendered and makes my trans child very uncomfortable.” “When it comes to talking about things that are very dysphoric for patients, it would be better to use hypotheticals, rather than possessive pronouns.”

BV, bacterial vaginosis; ER, emergency room; HIPAA, Health Insurance Portability and Accountability Act; OT, occupational therapy.

In response to the baseline survey, trainings developed by the hospital's GDTF emphasized the importance of affirmed name and pronoun use, privacy, and confidentiality in all health care encounters. In response to specific GDTF recommendations, the hospital removed gender markers from patient wristbands and made the name the patient goes by more prominent in the EMR and on the wristband. The patient portal was also updated to allow patients and/or parents to document affirmed name, gender identity, and sex assigned at birth before visits. Members of the GDTF developed a mandatory online training for the completion of the SOGI form. The training covered the basics (filling out the form and finding the form in the EMR) as well as scripts to be used with patients when filling out the form. Nearly all physicians and APPs (97.3%) completed the SOGI training (1,662 individuals in total).

The “Understanding Gender and Sexual Orientation” module was completed by 11,090 of 11,148 (99.4%) hospital employees, including 2556 nurses (23%), 1291 physicians or dentists (11.6%), 1219 technicians (11%), 599 APPs (5.4%), 413 schedulers (3.7%), 356 behavioral health providers (3.2%), 267 respiratory therapists (2.4%), 260 pharmacists and pharmacy staff (2.3%), 255 physical and occupational therapists (2.0%), 177 medical assistants (1.6%), 121 social workers (1.1%), 139 research assistants (1.3%), other medical staff representing <1% of team members, and 2859 nonmedical staff (25.8%, ranging from attorneys, mechanics, cooks, cashiers, and valets to staff in medical coding, physician relations, billing, and others). Course evaluations indicated that 85% of hospital employees agreed or strongly agreed that “the course was helpful to their role,” while 12.1% were neutral, and 3% disagreed or strongly disagreed. When responding to the statement, “I learned something new from this course,” 81% strongly agreed or agreed; 14% were neutral; and 5% disagreed or strongly disagreed.

Inclusivity efforts

GDTF members commissioned a local LGBT+ artist to design pronoun pins for team members to wear and pin distribution was paired with a “What it means to wear a pronoun pin” handout. To foster an environment of empathy where people can evaluate implicit biases, the hospital instituted a monthly “Experience Different” conversation series for team members to engage in an interactive dialog about the impact of difference on work, relationships, and lived experiences. Sessions on “Experiencing Gender” as a focus were held at the primary campus and three satellite locations, attended by about 60 people.

Discussion

In this quality improvement effort, we incorporated patient/family feedback to rollout the SOGI form in our EMR and train over 11,000 medical and nonmedical team members. There were few differences in patient-reported name and pronoun use between 2017 and 2020, although the response rate for surveys was low. Qualitative responses in the follow-up survey demonstrated favorable reactions to eliminating gender markers on wristbands, team member pronoun pins, and affirmed names being printed on wristbands.

LGBTQ+ patients' health needs are not being adequately met nationwide due to inadequate education and preparation of health care team members. Lack of access to safe, appropriate, and affirming health care further increases the risk of poor health outcomes and perpetuates health disparities.^11,12 Currently, little or no time is spent training health care students and providers about LGBTQ+ health topics, which translates to insufficient and inaccurate knowledge and discomfort in providing quality care to gender-diverse patients.^12–16 Most existing medical education is composed of one-time attitude and awareness-based interventions that cause short-term improvements, but do not increase medical knowledge and suffer methodologically.¹³ Although some of our trainings were “one-time” interventions, there were several other efforts to continue conversation and promote inclusivity. Systematic reviews demonstrate that LGBTQ+-focused educational programs can be effective at increasing knowledge, and intergroup contact is effective at promoting positive attitudes toward LGBTQ+ individuals, which we focused on in our trainings.^13,15–18 The accelerating trend of gender diverse and other LGBTQ+ health care education publications demonstrates the surging motivation for improvement in knowledge and comfort for trainees and providers.^13,16

Despite the motivation to improve LGBTQ+ knowledge and inclusivity, the GDTF encountered multiple barriers to implementing the SOGI form and providing LGBTQ+ education. These barriers included institutional hesitancy, time limitations, interdepartmental coordination, lack of baseline knowledge, and a need for ongoing training/education, challenges that face other institutions as well.^13,19 However, our initiatives and trainings were unique in that the entire health system received training, with additional training for those filling out SOGI, and a quarter of those who took the “Understanding Gender and Sexual Orientation” module were are not directly involved in patient care.

In 2015, the Centers for Medicare and Medicaid Services and the Office of the National Coordinator for Health Information Technology began requiring that all EMRs certified for Meaningful Use related to quality improvement be able to record SOGI data.²⁰ As our organization came into compliance, we found a number of important factors that facilitated SOGI data collection: identifying champions who are passionate about LGBTQ+ health, engaging leadership early and throughout the process, incorporating health information technology team staff, and delivering multilevel team member education.^19,21 The process to formally incorporate SOGI data collection takes years and requires a shift in organizational culture.^19,21 Yet we found that resistance to including SOGI in the EMR was an opportunity for education at all levels of team members. Many providers at our organization were not previously asking patients about SOGI information, even though most patients understand SOGI questions and are not distressed by them.^21–25 We focused on training providers initially, but other institutions may take a different approach. Patients at our health system and others have the option of entering this information online before the visit.¹⁹

There were several strengths of this quality improvement work. There was involvement from a diverse array of team members within the organization as well as patients/families at the TRUE Center. We achieved system-wide incorporation of the SOGI form into the EMR and trained almost every provider to properly complete it. Other strengths include the different modalities for the trainings offered and the inclusion of scripts to assist health care team members when completing the SOGI form. Limitations included low response rates for the patient/family surveys and completion of surveys only by families seen in TRUE, rather than throughout the health system. Finally, patients/families were surveyed <12 months after system-wide SOGI rollout, so responses may not reflect the full effect of the training.

We present one health system's approach to SOGI rollout and training. Future work will focus on improving inclusivity for LGBTQ+ team members within our institution.

Abbreviations Used

APP

advanced practice provider

BV

bacterial vaginosis

EMR

electronic medical record

ER

emergency room

GDTF

Gender Diversity Taskforce

HIPPA

Health Insurance Portability and Accountability Act

OT

occupational therapist

REDCap

Research Electronic Data Capture

SOGI

sexual orientation and gender identity

TRUE

Trust, Respect, Understand, Emerge

Author Disclosure Statement

N.J.N. consulted for Neurocrine Biosciences, Inc., and S.S., R.S., C.B., L.C., R.F., L.L., D.C.P., A.P., D.H.R., A.S., and S.W. have no conflicts of interest.

Funding Information

This work was funded by a Clinical Effectiveness and Patient Safety Small Grant from the University of Colorado School of Medicine and the Colorado Clinical & Translational Sciences Institute with the Development and Informatics Service Center grant support (NIH/NCRR Colorado CTSI Grant UL1 RR025780). N.J.N. is supported by the NIH/NICHD Building Interdisciplinary Research Careers in Women's Health grant (K12 HD 057022) and the Doris Duke Foundation.

Cite this article as: Staggs S, Sewell R, Buchanan C, Claussen L, Franklin R, II, Levett L, Poppy DC, Porto A, Reirden DH, Simon A, Whiteside S, Nokoff NJ (2022) Instituting sexual orientation and gender identity training and documentation to increase inclusivity at a pediatric health system, Transgender Health 7:5, 461–467, DOI: 10.1089/trgh.2021.0016.