Gender Identity Documentation Research Articles

LGBTQ+ Supportive and Inclusive Care Practices: Survey Data From the T1D Exchange Quality Improvement Collaborative

OBJECTIVE Living with type 1 diabetes is challenging, but more barriers exist when one also identifies as LGBTQ+ (lesbian, gay, bisexual, transgender, queer, or other gender-expansive identities). Acknowledging the importance of identifying this population and providing personalized care, the Health Resources and Services Administration mandated institutions to document sexual orientation and gender identity (SOGI) data. To understand the current state of SOGI documentation in the T1D Exchange Quality Improvement Collaborative, a survey assessing LGBTQ+ supportive and inclusive care practices was given to affiliated sites. RESEARCH DESIGN AND METHODS Thirty-three pediatric and 21 adult care centers were surveyed via Qualtrics. The survey included questions about their electronic health record documentation of patient-identified gender, pronouns, sexual orientation, and sex assigned at birth (SAAB). Care centers also reported on the legality of gender-affirming care in their municipalities, as well as their willingness to change SAAB after patients meet requirements. Fisher’s exact tests were used to evaluate response frequencies. RESULTS All 33 of the pediatric centers and 81% (17 of 21) of the adult centers responded to the survey. Sixty-four percent of pediatric centers had established strategies to support SOGI documentation, whereas only 50% of adult centers had implemented strategies. Some adult centers could not confirm whether they documented SOGI. Differences were seen between the pediatric and adult endocrinology centers in their documentation of gender identity (P = 0.04) and pronouns (P = 0.02). CONCLUSION Although most endocrinology centers documented gender identity and pronouns, fewer documented sexual orientation. Further work is needed to improve SOGI documentation and assess its impact on LGBTQ+ patients with diabetes.

Improving Sexual Orientation and Gender Identity Documentation at an NCI-Designated Comprehensive Cancer Center

To increase the rate of sexual orientation and gender identity (SOGI) patient data collection in healthcare software for new patients at a NCI-Designated Comprehensive Cancer Center, via targeted identification of Advanced Practice Providers (APP), development of novel SOGI collection workflows, creation of a real-time SOGI data dashboard, and tailored training utilizing existing High Reliability Organization (HRO) huddles in order to measure, analyze, and improve the quality of care, safety, and patient experiences for Sexual and Gender Minority (SGM) patients. Prior to interventions, project leadership (PL) and data analytics staff obtained SOGI baseline data, while cancer center clinical leadership, registration, and administrative staff identified APPs as the most appropriate staff to collect patient SOGI data. Intervention 1: PL met with Disease Management Groups (DMG)/HRO leads of thoracic medical oncology to identify a practice-level APP champion. PL and the APP champion scripted language for multiple scenarios when asking SOGI questions, and served as a resource for additional practice APPs. PL provided SGM-focused training during HRO huddles, which included how to ask and document SOGI, and significance of asking SOGI information. SOGI data completion rate was tracked on a HRO scorecard. This intervention was replicated across additional DMG/HROs during the study period. Intervention 2: Breast surgical oncology completed Intervention 1 and added SOGI questions to their new patient-facing intake form, allowing patients to self-identify. PL and data analytics team provided continuous feedback to DMG/HRO leads on provider-level completion rates and additional education as needed. At the end of the Interventions, there were 9 LGBTQ+ Knowledge and Awareness HRO training sessions completed resulting in over 300 unique individuals receiving advanced SOGI documentation education. For intervention 1, there were 12,322 new patients asked their SOGI information, which was a greater than 300% increase in SOGI documentation (baseline completion rate for sexual orientation and gender identity was 17% and 21%, respectively, which improved to 77% and 84%). For intervention 2, there were 3,217 new patients asked their SOGI information, which was a greater than 400% increase (baseline completion rate for sexual orientation and gender identity was 13% and 16%, respectively, which improved to 81% and 81%). Together, patient self-reporting quickly increased data completion rates from baseline, comparable to clinical sites from Intervention 1, and may decrease the burden of APPs collecting SOGI history; however, clinical review of questions is important and may further increase SOGI data completion. Leadership buy-in, site champions, and active data monitoring are essential to measurable change. Together, improved SOGI data completion will allow for improved equitable cancer care and increased assessment of SGM cancer disparities.

Identification and Reporting of Gender Identity in HIV Surveillance Data in the Deep South.

IntroductionAlthough studies have identified high prevalence of HIV among individuals who are transgender, HIV surveillance data regarding gender identity is incomplete, resulting in uncertainty regarding the gender identity, including transgender and other diverse gender identities, of individuals diagnosed with HIV. This information is critical to planning strategies for HIV prevention and care.MethodsFrom August 2018 to March 2019, interviews were conducted with HIV surveillance leadership (including Surveillance Directors, Epidemiologists, and HIV/STI Prevention Staff) at offices of epidemiology from eight US Deep South states regarding their practices related to gender identity documentation in HIV surveillance data and the barriers encountered in these documentation processes as well as their recommendations for improving gender identity data collection.ResultsInterview findings indicated significant barriers to collection of accurate gender identity information in HIV surveillance data including lack of standardized data systems for collecting gender identity; difficulty obtaining gender identity information from HIV testing sites, laboratories, and medical databases; and need for enhanced cultural sensitivity and gender identity knowledge at all levels of the data collection process. Recommendations from the state HIV surveillance staff, leaders, and epidemiologists are included in the findings.Conclusions and Policy ImplicationsEffective, well-coordinated strategies are needed to improve gender identity information in HIV surveillance reporting. Recommendations include standardizing and enhancing data collection strategies, providing cultural sensitivity training at all levels of HIV testing/reporting, and developing formal guidance and providing technical assistance that targets and educates laboratories and medical organizations to implement systems of data collection that routinely and safely capture gender identity data.

Frequency of Sexual Orientation and Gender Identity Documentation After Electronic Medical Record Modification.

Documentation of sexual orientation (SO) and gender identity (GI) is crucial to identify lesbian, gay, bisexual, and transgenderyouth and perform meaningful research to improve health disparities in this community. As a result, some electronic medical records (EMRs) have incorporated SO and GI into part of the provider's workflow for documentation. We aimed to evaluate the effect this modification has had on the frequency of SO and GI documentation. DESIGN, SETTING, PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: This was a retrospective chart review of patient encounters from an outpatient pediatric and adolescent gynecology clinical practice. The rate of documentation of SO and GI were compared between encounters that took place before the implementation of the EMR modification and those that took place after. Additionally, we examined rates of GI and SO documentation according to visit type and patient race. A statistically significant increase in the frequency of SO and GI documentation after the EMR modification was detected. The documentation rate of SO increased from 10/73 (13.7%)to 32/73 (45.1%) (P<.01) and GI documentation rate went from 1.4% to 46.5% (P<.01) after the EMR changes were implemented. SO or GI was most commonly documented in social history (90%). There were no differences in documentation on the basis of race or type of encounter. Including a specific tab for SO and GI in the EMR significantly increased the frequency of SO and GI documentation. Despite this increase, frequency of documentation remained at less than 50%, emphasizing the need for further improvement.

Evaluation of sexual orientation and gender identity documentation at school-based health centers in New York City.

National organizations have called for routine collection of data on sexual orientation and gender identity (SOGI) in clinical settings to track access to and quality of care provided to sexual and gender minority patients to improve health outcomes. However, there are limited data on this implementation for among adolescent populations. A secondary data analysis from seven school-based health centers (SBHCs) in New York City explored SOGI documentation for 8888 adolescent patients in 2015 to 2018. Using Electronic Health Records, SBHC medical providers' implementation rate of patient SOGI documentation was assessed. Trends in SOGI documentation were reviewed. At 18-month post-EHR modification and training, SOGI documentation increased and was sustained at 47%. Those documented as female were significantly more likely to have SOGI documentation compared to those documented as male (36% vs 26% for SO; 36% vs 25% for GI). This study identified incomplete data collection in SOGI documentation among adolescents receiving medical and mental health services in SBHCs.

“It'd Be Great to Have the Options There”: A Mixed-Methods Study of Gender Identity Questions on Clinic Forms in a Primary Care Setting

PurposeTransgender youth experience significant barriers to health care. Asking patients about gender identity on clinic intake forms is recommended to improve care in adult populations. Little is known about how to implement these recommendations in adolescent populations. This study aimed to evaluate the addition of gender-related questions in an adolescent primary care setting and to determine if adding these questions to clinic forms could improve documentation of gender identity in the electronic health record (EHR). MethodsWe conducted cognitive interviews with 21 adolescents (n = 11 transgender, n = 10 cisgender) to examine gender-related questions (name, pronoun, gender identity, assigned sex at birth). These questions were added to a clinic intake form. We conducted a retrospective chart review of patients who came to the clinic for a physical examination visit three months before (n = 615) and after (n = 827) the form change and used chi-square tests to examine the differences in EHR documentation of gender identity. ResultsIn interviews, the new questions were acceptable and interpretable to adolescents of diverse gender identities. Participants described the questions as beneficial to all patients and perceived them as an indicator of a welcoming clinic environment. The retrospective chart review found that provider documentation of gender identity in the EHR significantly increased after the form change from 51.3% to 66.3% (p < .0001). ConclusionsThis intervention was acceptable to adolescents and associated with a significant increase in EHR documentation. Future studies should investigate how the form change may have facilitated discussion about gender and health and implications for provider training and support.

A Novel Method for Identifying Transgender and Gender Diverse Patients with Lymphoma: A Single Center Experience

Background: 0.6% of the population is transgender or gender diverse (TGD) and have a gender that differs from their sex assigned at birth (Flores et al., Williams Institute, 2016). TGD people face mistreatment and discrimination, and represent a vulnerable population which is understudied and not well-captured in large cohorts (James et al., National Center for Transgender Equality, 2015). Thus, little is known regarding their cancer risks, prevalence, and outcomes, particularly in the realm of hematologic malignancies. Efforts to study malignancy prevalence in TGD populations are of utmost importance to improve patient care. Limited data suggests TGD patients have higher rates of certain cancers, including lymphoma, compared to other patients, but require validation (Braun et al., Epidemiol Rev, 2017). To accomplish this goal, we sought to design and implement a reproducible data collection strategy to identify TGD patients within a cohort of patients with lymphoproliferative disorders at the Wilmot Cancer Center. Methods: We reviewed the charts of 2200 unselected, consecutive patients with any lymphoproliferative disorder from a single-center, regionally representative, database at the University of Rochester. Our algorithm included searching the following variables for suggestion of TGD identity: demographics, preferred name/alias, medications, problem list, medical/surgical history, social history, an electronic medical record (EMR) lesbian, gay, bisexual, and transgender (LGBT) tab, and karyotype data if available. Additionally, we searched each chart for the following terms: "transgender," "trans," "transsexual," "gender," "genderqueer," "non-binary," "non-conforming," "male to female," "MTF," "female to male," "FTM," "male," and "female" to identify TGD patients. Data on diagnosis, treatment, and more detailed demographics were collected for patients identified as TGD. We report descriptive analyses of our results. Results: Three transgender patients with lymphoproliferative disorders were identified, comprising 0.1% of the database (95% CI 0%, 0.4%). All were white, transgender women with diagnoses of follicular lymphoma, chronic lymphocytic leukemia, and atypical angiotrophic t-cell infiltrate concerning for lymphomatoid papulosis. All three were identified by medication history and searches for the terms "female" and "transgender" as well as aliases differing from legal name. Conclusions: More oncologic research must be done to explore the prevalence of specific malignancies in TGD populations. Such research is limited by inconsistent documentation of gender identity in EMRs resulting in lack of basic epidemiologic data on TGD people with cancer. Our chart review successfully identified three transgender patients. Among the methods used, medication histories, discrepancies between legal name and alias, and searches for the words "transgender" and "female" provided the most fruitful results. We expected diagnoses related to transgender identity, documentation of transgender identity, and the LGBT tab to yield significant results. However, these were low-yield sources in our study. Our inability to identify a percentage of TGD patients similar to prior data was likely multifactorial: 1) TGD patients may not want their gender identities known to oncologists and may not share related information; 2) oncologists may not ask about gender identity or related histories; and/or 3) TGD patients may seek care at outside institutions. Alternatively, the prevalence of lymphoma may be low in TGD populations, conflicting with prior data. Further research regarding TGD patients with hematologic malignancies necessitates specific collection of gender identity data within the EMR and large datasets such as the cooperative groups. More research is needed regarding the optimum questions regarding gender identity which will yield accurate data and maintain strong relationships between patients and providers. Disclosures Casulo: Celgene: Research Funding; Gilead: Honoraria, Other: Travel, accommodation, expenses; Roche: Other: Travel, accommodation, expenses.

Provider Practices and Perspectives regarding Collection and Documentation of Gender Identity

ABSTRACT Recent recommendations to include patient sexual orientation (SO) and gender identity (GI) in the electronic health record (EHR) aim to improve clinical care and address health disparities among sexual and gender minority patients. Collection and documentation of GI may be complex due to multiple clinically relevant components. This study explored provider practices in collecting and documenting GI across multiple specialties. Qualitative interviews with 25 healthcare providers were transcribed verbatim, and thematic analysis and principles of grounded theory were used to analyze the data. Without a protocol and absent dedicated locations in the EHR for collecting and documenting patient GI, provider practices were inconsistent and highlighted challenges for communication across clinical staff. Providers noted that patients’ disclosure of GI was typically unprompted, or was presumed through disclosure of gender affirming treatments. Findings indicate the need for provider training and appropriate EHR fields to support GI collection and documentation.

Documentation of Gender Identity in an Adolescent and Young Adult Clinic

PurposeTo determine if changing electronic health record (EHR) note templates can increase documentation of gender identity in an adolescent and young adult clinic. MethodsA two-step gender question was added to EHR note templates for physicals in February 2016. A retrospective chart review was performed 3 months before and after this addition. The primary measure was whether answers to the two-step question were documented. Gender identity/birth-assigned sex discordance, age, and use of the appropriate note template post-template change were also measured. ResultsOne hundred twenty-five pretemplate change and 106 post-template change physicals were reviewed with an inter-rater reliability of 97%. Documentation of answers to the two-step gender identity question increased from 11% to 84% (p < .001). ConclusionsThis study suggests that incorporating a standardized question into EHR note templates is effective at improving the documentation of gender identity in youth presenting for annual physicals.