Collection Of Gender Identity Data Research Articles

Abstract B092: ‘We’ve got to go to the doctor and we’re scared to death’: Community members perspectives on sexual orientation and gender identity data collection in healthcare settings

Abstract Purpose: Much research is needed to advance our knowledge of LGBTQ cancer disparities, but research is hindered by inconsistency in collection of data on sexual orientation and gender identity (SOGI) across clinical and research settings. Nationally, there have been increased efforts to standardize SOGI data collection. The purpose of this study was to identify potential patient-level barriers and facilitators to SOGI data collection within the catchment area of a midwestern cancer center. Methods: Investigators conducted 4 focus groups in partnership with community-based organizations and stakeholder groups that reflected the catchment area’s diverse populations. Using a semi-structured approach, participants were asked about their experiences with SOGI data collection, barriers and facilitators to this collection, and how they viewed the practice of collecting SOGI data. Focus groups were audio recorded and transcribed. Data was coded and interpreted using applied thematic analysis. Results: Four focus groups were conducted with 32 participants in total. There were 2 LGBTQ groups (one mixed race/ethnicity, one African American), and 2 predominantly non-LGBTQ groups (one African American and one Middle Eastern/North African or MENA). Across all participants, 53% were African American (n=17), 25% identified as MENA (n=8), 28% were White (n=9), 44% of the participants identified as women (n=19), one individual identified as a transgender woman & 2 individuals as non-binary, and 53% reported their sexual orientation as gay/lesbian/same-loving. In all groups, participants emphasized a need to educate both patients and providers about the importance of SOGI data collection, why it is collected, and its relevance to improving medical care. Participants further discussed the quality and depth of the patient-provider relationship as a critical factor in a patient’s comfort and willingness to share SOGI data. Participants also underscored the importance of privacy ownership (i.e., the ownership of one’s own private information) and control in relation to SOGI status, and the desire to minimize potential privacy turbulence of an unexpected and unwelcome disclosure breach. All groups discussed how the potential for harm resulting from SOGI disclosure could deter patients from sharing SOGI information. Those who identified as LGBTQ, recounted both personal experiences and the experiences of others in which disclosure of SOGI information directly led to poor treatment by a healthcare professional. It is this potential for harm and discrimination that led many participants to stress the need for privacy control until a safe environment is established. Conclusions: Findings highlight a number of potential patient barriers to SOGI data collection from community members’ perspectives, including the need for widespread education on this topic and clinical environments in which patients are safe disclosing SOGI status. Future research and practice should consider specific methods to normalize the practice of SOGI data collection in the cancer care context. Citation Format: Ariel Washington, Ali Fakih, Lindsey Toman, Riham Ayoub, Emma Noble, Susan Musto, Brittany Dowe, Scott Ellis, Andrea Sakleh, Hayley S. Thompson, Latonya Riddle-Jones. ‘We’ve got to go to the doctor and we’re scared to death’: Community members perspectives on sexual orientation and gender identity data collection in healthcare settings [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B092.

Does cancer clinical trial enrollment for sexual and gender minority people differ from heterosexual, cisgender people?

BackgroundSexual and gender minority (SGM) people experience cancer disparities compared to heterosexual and cisgender (non-SGM) people and likely have barriers to cancer clinical trial enrollment. Data are sparse, however, regarding cancer clinical trial enrollment for SGM versus non-SGM people. MethodsUsing data from the 2020 Behavioral Risk Factor Surveillance Survey (BRFSS), we applied a logistic regression to assess associations between SGM status and clinical trial enrollment for 346 SGM and 9441 non-SGM people diagnosed with cancer. The model was adjusted for age at diagnosis, race/ethnicity, partnership status, education, employment, and sex assigned at birth. ResultsSGM individuals had 94 % greater odds than non-SGM individuals to report participation in a clinical trial (aOR 1.94; 95 % CI 1.02–3.68) after adjusting for other factors. ConclusionsData from the BRFSS suggest that SGM people with cancer have higher odds of clinical trial enrollment compared to non-SGM people with cancer. Future work is needed to prospectively track oncology treatment, including clinical trial participation, and outcomes of SGM people versus non-SGM people with cancer. Other studies will be needed to develop and implement systematic, consistent, and non-stigmatizing sexual orientation and gender identity data collection methods.

Trends in Sexual Orientation and Gender Identity Data Collection.

The aim of this study was to determine response patterns to sexual orientation and gender identity (SOGI) questions in the Behavioral Risk Factor Surveillance System (BRFSS) over time and to assess nonresponse and indeterminate responses by demographic characteristics. This is a secondary data analysis of the SOGI module of the BRFSS. We used data from 46 states and Guam that implemented SOGI questions between 2014 and 2022. We used weighted analyses that accounted for the sampling design, determined SOGI response patterns by year, and assessed nonresponse and indeterminate responses by demographic characteristics. Over time, increasing numbers self-reported as sexual and gender minority respondents, while heterosexual identity declined. Sexual orientation nonresponse and indeterminate responses increased with time, while respondents' reports of not knowing gender identity declined. Hispanic, older, respondents, those with lower education, and those who completed the questionnaire in Spanish had higher SOGI nonresponse and indeterminate responses. The low amount of SOGI nonresponse and indeterminate responses in the BRFSS can be instructive for the implementation of SOGI questions in medical settings. SOGI data collection in all settings requires improving procedures for the groups that have been shown to have elevated nonresponse and indeterminate response.

A Multistakeholder Qualitative Study to Inform Sexual Orientation and Gender Identity Data Collection in the Cancer Care Setting.

Purpose: Sexual and gender minoritized (SGM) populations face health disparities along the cancer care continuum, although attempts to define these disparities are limited by a lack of comprehensive sexual orientation and gender identity (SOGI) data collection. The objective of this study was to interview a diverse group of stakeholders to understand attitudes, barriers, and facilitators to inform data collection approaches in a cancer care setting. Methods: This was a qualitative study conducted from March to July 2023 with paired surveys of stakeholders including patients, caregivers, providers, and cancer registry staff. Twenty participants across these categories, including half who identified as SGM, completed surveys and interviews. Qualitative data were reduced to themes with exemplar quotations using rapid qualitative analysis methods and compared to survey data. Results: Themes revealed general support for SOGI data collection as part of holistic cancer care, and all participants acknowledged that specific SOGI-related information, particularly correct pronoun usage, was essential to inform patient-centered care. Themes revealed tensions around optimal SOGI data collection methods, mixed opinions on the relevance of sexual orientation, experiences of discrimination and discomfort related to SOGI, and limited acknowledgment of population benefits of SOGI data collection. Conclusion: Themes demonstrated overall support for SOGI data collection but also revealed several barriers, such as a lack of recognition of population benefits and experiences of discrimination and discomfort, that will need to be addressed to comprehensively collect these data. Based on diverse preferences and limitations of all methods of collection, a multimodal approach may be needed to optimize completion.

O-159 Domestic and cross-border reproductive care among same-sex male intended parents: comparing live birth rates (LBRs) in a national retrospective cohort in the United States (U.S.)

Abstract Study question How common is cross-border reproductive care (CBRC) in the U.S. among international same-sex male intended parents? Do CBRC LBRs differ compared to domestic counterparts? Summary answer A substantial number of international same-sex male intended parents seek CBRC in the U.S. LBRs per transfer are reassuring and comparable to domestic counterparts. What is known already Same-sex male intended parents often work with a gestational carrier to have a genetically related child(ren); however, restrictive and/or discriminatory policies in their home countries may prevent access. Intended parents may seek CBRC in countries like the U.S. due to favorable regulations. However, the volume of CBRC activity among same-sex male intended parents has been difficult to estimate accurately due to poor sexual orientation data collection. Capitalizing on national databases that identify same-sex male intended parents is the first step to describing CBRC trends and their associated outcomes in a marginalized population that is often excluded in the literature. Study design, size, duration This national retrospective cohort study included U.S. based gestational carrier embryo transfer cycles from the Society for Assisted Reproductive Technology (SART) database in the years 2017–2020. Among participating clinics (n = 488), 6,168 cycles among same-sex male intended parents were identified. Relative risks (RRs) for LBRs per transfer were compared for cycles including domestic (i.e., U.S. based, n = 3,052) and internationally based (n = 3,080) patients. LBR and country data were missing for 546 and 36 cycles, respectively. Participants/materials, setting, methods The inclusion criteria were transfer cycles among male patients with male partners. Unadjusted and adjusted RRs for LBRs per transfer were calculated to compare domestic (reference) and internationally based groups using multivariable Poisson and logistic regression models with generalized estimating equations (GEEs). Models were adjusted for donor age, transfer type (i.e., fresh, frozen), day of transfer, number of embryos transferred, male infertility, and the use of intracytoplasmic sperm injection, assisted hatching, and preimplantation genetic testing. Main results and the role of chance Between 2017 and 2020, 6,168 cycles with an embryo transfer to a gestational carrier occurred among same-sex male intended parents in the U.S. In half of the cycles, the U.S. was a destination for CBRC (50%, n = 3,080) among which (48%, n = 1,540) were from one of 23 European countries. Regarding countries of residence for CBRC cycles (n = 3,080), those most reported were China (23%), France (19%), Israel (13%), Spain (11%), the United Kingdom (6.1%), Australia (4.1%), Germany (3.7%), Italy (2.6%), Switzerland (1.5%), Canada (1.5%), Belgium (1.4%), Singapore (1.0%), Taiwan (1.2%), Norway (1.2%) and The Netherlands (0.92%). Additionally, there were 76 cycles from 8 countries in South America (2.3%), 9 cycles from 6 countries in Africa (0.27%), and 3 cycles from 2 countries in Central America (0.089%). Most cycles were in the U.S. West (72%, n = 4,441; e.g., California [47%]). Median oocyte age was 26 years (interquartile range 24,28) with a majority of cycles involving single embryo transfer (78%, n = 4,802). LBR per transfer was 69% (n = 3,867). There was no statistical difference between live births for domestic versus CBRC cycles in the unadjusted (RR 1.14, 95% confidence interval [CI] 0.96, 1.37; p: 0.141) or adjusted regression models (aRR 1.06, 95% CI 0.86, 1.32; p: 0.572). Limitations, reasons for caution The SART surveillance system captures most (∼90%) but not all embryo transfer cycles in the US. Current gender identity data were not available. Only the individual identified as the patient (and not the partner) indicated country of residence. The rationale for pursuing CBRC in the U.S could not be explored. Wider implications of the findings This study highlights a substantial amount of CBRC among same-sex male intended parents choosing the US for reproductive care. Implementing improved sexual orientation and gender identity data collection strategies are critical to filling CBRC data deserts not only among same-sex male intended parents but all sexual and gender minority populations. Trial registration number Not applicable

Advancing Equity in Cancer Care: The Critical Role of Sexual Orientation and Gender Identity Data Collection.

New study highlights critical gaps and opportunities to enhance equitable cancer care for sexual and gender minority patients.

TRANSforming Gender Identity Data Collection and Representation for Gender Diverse Youth.

TRANSforming Gender Identity Data Collection and Representation for Gender Diverse Youth.

Sexual Orientation and Gender Identity Data Collection in Cancer Care: A Nationwide Landscape Assessment Update.

Routine collection of sexual orientation (SO) and gender identity (GI; collectively SOGI) in cancer clinics advances cancer care equity. In 2022, NCI Community Oncology Research Program (NCORP) practice groups were asked about routine collection of SOGI data in the electronic health record. The proportions of practice groups reporting collection of SO and/or GI data were calculated, and practice group characteristics were assessed for associations. Of 271 practice groups nationwide, 42% (n = 112) collect SO data, 58% (n = 157) collect GI data, and 35% (n = 96) collect both. In multivariate analyses, SO data collection was associated with practice groups having minority outreach staff (odds ratio [OR], 2.07 [95% CI, 1.12 to 3.81]; P = .02); GI data collection was associated with practice groups located in the Northeastern United States (OR, 2.08 [95% CI, 0.73 to 5.91]; P = .045), and those with a higher proportion of new patients who were White (OR, 1.02 [95% CI, 1.01 to 1.04]; P < .001). Practice groups in the South were least likely to collect SOGI data (OR, 0.49 [95% CI, 0.26 to 0.94]; P = .004). There were no statistically significant differences in SO and/or GI collection on the basis of the practice group's proportion of Medicaid/Medicare patients, number of new patients with cancer per year, or practice ownership. Slightly over one third of NCORP practice groups report routinely collecting SOGI data. There are regional differences in data collection, underscoring the need to craft targeted, region-specific interventions focused on boosting the capture and recording of SOGI data in an affirming manner.

Abstract IA016: Best practice strategies for SOGI data collection: Lessons learned from conducting and implementing the Ask SOGI study

Abstract Background: Collection of reliable data on Sexual Orientation and Gender Identity (SOGI) is essential for improving cancer care for Sexual and Gender Minority (SGM) populations that experience health disparities. To address gaps in reliable SOGI data collection, the National Cancer Institute (NCI) funded a series of awards to enhance sexual orientation and gender identity (SOGI) data collection at cancer centers. In August 2022, we launched the “We Ask Because We Care: Enhancing Sexual Orientation and Gender Identity Data Collection in New Mexico Cancer Center” (Ask SOGI) research intervention at the University of New Mexico Comprehensive Cancer Center (UNMCCC). Methods: Our research team used a mixed methods framework that included a cancer center-wide readiness assessment survey and focus groups to: 1) identify potential barriers to the systematic collection of patient SOGI data, incorporate National Academy of Science Engineering Medicine (NASEM) recommended SOGI measures into the UNMCCC Electronic Health Records; 2) tailor future staff/provider-cultural competency/cultural humility educational interventions, and 3) design a patient-facing “We Ask Because We Care” campaign to encourage welcoming and comfortable care for SGM patients and their informal cancer caregivers. Results: Although the study is on-going, initial survey findings suggest that staff and provider concerns regarding the appropriate method and time for asking patients about their SOGI may inhibit data collection at the cancer center. Respondents desired cancer center led education and training for staff and faculty that would include appropriate points and methods for SOGI data collection, demonstrations of SOGI integration and utilization into the electronic health record, and strategies to encourage conversational confidence so staff and providers can engage patients and their caregivers in sensitive topics. Moreover, SGM patients and caregiver focus group participant reviewers of the emerging “We Ask Because We Care” campaign were positive about the visual images, and acknowledged the importance of such efforts for creating affirmative spaces for SGM persons experiencing cancer. Conclusion: Interventions that address multilevel staff and provider, as well as patient and caregiver concerns regarding discussions of sexual orientation and gender identity data collection may increase more consistent collection of SOGI data that can be used to enhance cancer care and health disparities research. Citation Format: Miria Kano, Dolores Guest, Amy Farnbach Pearson, Mikaela Kosich, Kendal A. Jacobson, Shiraz Mishra, Andrew Sussman, Bernard Tawfik, Zoneddy Dayao, NFN Scout, Cathleen Willging. Best practice strategies for SOGI data collection: Lessons learned from conducting and implementing the Ask SOGI study [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr IA016.

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities. We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding. To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related. Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement. The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices.

Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)-affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. We conducted 14 semi-structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis-heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.

Sexual orientation and gender identity data collection among NCI community oncology research program (NCORP) practices: A 5-year landscape update.

6548 Background: National organizations (ASCO, ACS, ACCR) have advocated for routine collection of sexual orientation and gender identity (SOGI) in cancer clinics to advance cancer health equity. In 2017, only 24% of NCI Community Oncology Research Program (NCORP) practices collected sexual orientation (SO) data, while 10% collected gender identity (GI) data; recent progress in collection is unknown. Methods: In 2022, NCORP practices again completed a Landscape Assessment to assess research capacity (funding support from 2UG1CA189824) and were asked whether they routinely collect SOGI data in the electronic health record (EHR). The proportions of practices reporting collection of SO and/or GI data and population level differences over time were calculated using Fisher’s exact tests. Univariate associations between SOGI data collection and site-related variables were evaluated using logistic regression; significant associations were then tested in separate multivariate logistic regression models. Results: 271 practices responded to the Landscape Assessment; 42% (114) reported that they routinely collect SO data, 58% (157) reported that they collect GI data; both were significantly higher than 2017 (p&lt;0.001). Compared to other regions, practices in Northeastern states were significantly more likely to report collecting GI, but not SO. Practices with higher proportions of White patients were also more likely to collect GI (p &lt; 0.001). Practices with community outreach staff were more likely to collect SO (Table 1). There were no significant differences in SOGI collection by Medicaid/Medicare patients, new cancer cases per year, or practice ownership. In both 2017 and 2022, sites in Southern states were less likely to collect GI than sites in other regions. Conclusions: Progress was made in SOGI collection between 2017 and 2022, but fewer than half of NCORP sites routinely collect SOGI data, in spite of national guidelines. Further examination of the cultural context of SOGI collection could inform efforts to improve data collection in the South and other regions. The lack of data on sexual and gender minority patients in the EHR contributes to health inequity and deficiencies in patient-centric care. [Table: see text]

Sexual Orientation and Gender Identity Data Collection in Electronic Health Records: Application of Recommendations Within the University of Colorado Health System (Sci253)

Sexual Orientation and Gender Identity Data Collection in Electronic Health Records: Application of Recommendations Within the University of Colorado Health System (Sci253)

A Systematic Review of Inflammatory Bowel Disease Epidemiology and Health Outcomes in Sexual and Gender Minority Individuals

A Systematic Review of Inflammatory Bowel Disease Epidemiology and Health Outcomes in Sexual and Gender Minority Individuals

Patient Perceptions of Sexual Orientation and Gender Identity Data Collection in an Outpatient Radiation Oncology Setting

Sexual and gender minority patients with cancer experience significant health disparities requiring tailored care. Collecting sexual orientation and gender identity (SOGI) data in the electronic medical record (EMR) could allow care to be tailored and is in line with radiation oncology's mission to better serve diverse patients. This article describes a systematic method for collecting SOGI data for all patients starting radiation treatment in a department of radiation oncology (DRO). During a 3-month experimental period, DRO staff administered a demographic questionnaire and attitude survey to new adult patients. SOGI demographic data, entered into the EMR by nursing staff, were extracted and analyzed for all patients from the experimental period and from the 3 months prior (control period). Descriptive and categorical data completion rates were compared between the experimental and control periods using independent-samples t tests and Pearson χ2 tests. A total of 788 patients were included in this analysis: 368 in the control period and 420 in the experimental period. Of the 420 patients enrolled in the experimental period, 267 (63.6%) were offered a survey, of whom 211 (79.0%) completed the survey. There were higher rates of sexual orientation responses entered into the EMR for the experimental group compared with the control group (56.9% vs 27.1%; P <.001), with the highest response rates for patients who completed a survey (82.9%). Ten patients (2.9%) identified as gay or lesbian and 100% identified as cisgender. The majority of patients were not upset by the form, with only 11 patients (5.2%) stating that any specific question caused them distress. Collecting SOGI data via a demographic form is feasible in an outpatient DRO. This approach was well received by the majority of patients and could lead to provision of higher-quality, tailored care.

Sexual Orientation and Gender Identity Data Collection in Oncology Practice: Findings of an ASCO Survey.

PURPOSE:Lack of collection of sexual orientation and gender identity (SOGI) data in oncology practices limits assessment of sexual and gender minority (SGM) cancer patients' experiences and restricts opportunities to improve health outcomes of SGM patients. Despite national calls for routine SOGI data collection, individual-level and institutional barriers hinder progress. This study aimed to identify these barriers in oncology.METHODS:An online survey of ASCO members and others assessed SOGI data collection in oncology practices, institutional characteristics related to SOGI data collection, respondents' attitudes about SOGI data and SGM patients, and respondent demographics. Logistic regression calculated adjusted odds ratios (ORs) and 95% CIs for factors associated with sexual orientation (SO) and gender identity (GI) data collection.RESULTS:Less than half of 257 respondents reported institutional SO and GI data collection (40% and 46%, respectively), whereas over a third reported no institutional data collection (34% and 32%, respectively) and the remainder were unsure (21% and 17%, respectively). Most respondents felt that knowing both SO and GI was important for quality care (77% and 85%, respectively). Collection of SO and GI was significantly associated in separate models with leadership support (ORs = 8.01 and 6.02, respectively), having resources for SOGI data collection (ORs = 10.6 and 18.7, respectively), and respondents' belief that knowing patient SO and GI is important (ORs = 4.28 and 2.76, respectively). Themes from qualitative comments mirrored the key factors identified in our quantitative analysis.CONCLUSION:Three self-reinforcing factors emerged as critical drivers for collecting SOGI data: leadership support, dedicated resources, and individual respondents' attitudes. Policy mandates, implementation science, and clinical reimbursement are strategies to advance meaningful data collection and use in clinical practice.

"I Think There's Only Two Fields for That": Hospital Registrar Attitudes and Practices for Collecting Patient Gender Identity Data.

This study aimed to understand the experiences of hospital registrars in collecting gender identity data. A qualitative study that thematically analyzed key informant interviews with 37 registrars regarding their attitudes and practices in collecting gender identity data. Collection of gender identity is influenced by (1) system-level barriers, (2) discrepancies in source of truth for documentation, and (3) registrars' underlying attitudes and behaviors. Findings demonstrate that person- and system-level barriers can interfere with the accurate and respectful collection of gender identity data, which is critical for tracking and addressing lesbian, gay, bisexual, transgender, and queer health disparities.

Pediatric sexual orientation and gender identity data collection in the electronic health record.

The systematic documentation of sexual orientation and gender identity data in electronic health records can improve patient-centered care and help to identify and address health disparities affecting sexual and gender minority populations. Although there are existing guidelines for sexual orientation and gender identity data among adult patients, there are not yet standard recommendations for pediatric patients. In this article, we discuss methods that pediatric primary care organizations can use to collect and document sexual orientation and gender identity information with children and adolescents in electronic health records. These recommendations take into consideration children's developmental stages, the role of caregivers, and the need to protect the privacy of this information. We also focus on the current limitations of electronic health records in capturing the nuances of sexual and gender minority identities and make suggestions for addressing these limitations.

Sexual Orientation and Gender Identity Data Reporting Among U.S. Health Centers

Sexual orientation and gender identity data collection is necessary to address health inequities. This study examines sexual orientation and gender identity data reporting among community health centers. Using the 2016-2019 Uniform Data System for 1,381 community health centers, trends in reporting of sexual orientation and gender identity data were examined. Multivariable logistic regression was used to assess associations between community health center characteristics and whether sexual orientation and gender identity data were available for ≥75% of a community health center's patients in 2019. Data were analyzed in 2021. In 2016-2019, the percentage of community health centers with sexual orientation and gender identity data for ≥75% of patients increased from 14.9% to 53.0%. In 2019, community health centers were more likely to have this data for ≥75% of patients if they were in nonmetro counties (OR=1.48, 95% CI=1.04, 2.10 versus metro), were in the South (OR=2.27, 95% CI=1.57, 3.31) or West (OR=1.91, 95% CI=1.27, 2.88 versus the Northeast), and had more patients aged between 18 and 39 years (OR=1.04, 95% CI=1.02, 1.07), between 40 and 64 years (OR=1.04, 95% CI=1.02, 1.06 vs <18 years), or veterans (OR=1.10, 95% CI=1.01, 1.20). This was less likely among community health centers serving 10,000-20,000 patients (OR=0.70, 95% CI=0.52, 0.95) and >20,000 patients (OR=0.44, 95% CI=0.32, 0.61 vs <10,000) and community health centers with more patients of American Indian/Alaskan Native (OR=0.98, 95% CI=0.97, 0.99) or unknown race (OR=0.92, 95% CI=0.86, 0.97 versus White). Collection of sexual orientation and gender identity data by community health centers has increased substantially since 2016, although gaps remain.

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.