Culture Key to Data Collection of Sexual Orientation and Gender Identity in Cancer Care

Despite the clear importance of sexual orientation and gender identity (SOGI) data in addressing health care disparities and accurately representing diverse patient populations, its routine integration into cancer care remains inconsistent. New research published online today in JAMA Network Open identifies key factors that either promote or hinder the consistent gathering of this crucial information in US outpatient oncology clinics. These findings offer valuable insights for guiding tailored clinical care, informing policy, and fostering inclusivity.¹

Researchers interviewed 62 health care professionals (HCPs) from 23 cancer centers across diverse geographic settings between September 1, 2022, and August 31, 2023, guided by a goal to understand organizational, technological, and cultural influences on systematic SOGI data collection. Sampling was purposeful for the greatest degree of heterogeneity possible. The sampled centers commonly featured an academic setting (61%), urban location (74%), and expanded Medicaid coverage before 2019 (83%). Interviewees were a minority female (42%), and had a mean (SD) age of 46 (11) years.

Only 30% (7 sites) systematically collected SOGI data, meaning SOGI data were collected on all patients. Forty-eight percent (11 sites) reported partially collecting data or having partially implemented a plan to do so, and 22% (5 sites) did not collect SOGI data at all, in that there were no structured fields in the electronic health records (EHRs) to collect these data, these fields were intentionally disabled, or both structured form fields and patient self-report were not utilized.

Contextualizing their findings, the authors noted that CMS mandated EHRs be able to document SOGI data a decade ago.² Further, in 2017 and 2023, the American Society of Clinical Oncology (ASCO) called for SOGI data collection, citing “disparities at every turn” among sexual and gender minority (SGM) patients.³

A majority of the 23 centers held American College of Surgeons Commission on Cancer accreditation (83%), and over half (57%) followed the Human Rights Campaign Healthcare Equality Index. Other affiliations were ASCO–Quality Oncology Practice Initiative Certification (44%), National Cancer Institute designation (35%), and adherence to National Standards for Culturally and Linguistically Appropriate Services (9%).

Key Drivers of Consistent Data Collection

Cancer centers that systematically collect SOGI data had several processes in place to facilitate. These were clear directives with mandatory workflows, structured EHR fields for SOGI data, strong leadership support, and knowing SOGI data are relevant to the practice. Regular reinforcement of data collection and administrative champions was also common.

Leadership buy-in, mandatory protocols, and electronic health record workflows all influence the effective collection of data on sexual orientation and gender identity in outpatient oncology clinics to improve patient-centered care. | Image Credit: © Nadzeya-stock.adobe.com

In sharp contrast, data were not collected at 22% of centers reporting this because of a lack of mandate from payers or accrediting organizations, with one survey respondent noting, “anything that’s mandated, we would do.” At 48% of sites with partial collection, implementation was sometimes by state delays.

Training and education proved crucial for SOGI data collection, with several of the interviewees reporting discomfort asking patients about their sexual orientation or gender identity. Effective training could cover the relevance of SOGI data, standardized patient language during intake, respectful questioning techniques, strategies to reduce patient discomfort, and understanding the patient perspective on SOGI data's significance.

Technology is also important, in that it can help streamline and automate the SOGI data collection process and improve accuracy, for instance, by embedding SOGI questions in portals and integrating clinician prompts. Regular audits were highlighted as essential for monitoring progress and identifying areas for improvement in SOGI data collection.

Overall, centers in the Northeast reported the highest degree of community acceptance of SOGI data collection, while cancer centers in the Midwest and South emphasized community trust was “critical” before implementing SOGI data collection system improvements.

Overcoming Barriers to Inconsistent Data Collection

Overall, several respondents expressed opinions that SOGI data are unrelated to clinical care and that this influenced their motivation to collect said information. Concerns about patient safety and potential community backlash also emerged as barriers, especially in regions with high social or political stigma. The authors, too, explained that cancer clinics that may lack backing from leadership are more likely to have lower rates of SOGI data collection, which only serves to highlight the importance of commitment to coordinated efforts to collect these data.

For clinicians and researchers seeking to expand or improve their SOGI data collection efforts, the authors note that their findings underline the necessity of a multifaceted approach that is supported by institutional policies or accreditation standards. Creating a supportive environment for SGM patients—such as through language choice, signage, and education—can also help normalize the process. This can also include, the authors propose, clarifying the purposes of SOGI questions, addressing privacy concerns, and reinforcing your center’s pledge of confidentiality, all of which can encourage open communication and make patients feel respected and understood.

“Factors associated with SOGI data collection were multifaceted, involving both external mandates and internal factors,” the authors conclude. “Despite the collection of SOGI data, their clinical use varied, suggesting a need for ongoing clinician education and development of strategies to improve the integration of SOGI data into patient care.”

References

1. Pratt-Chapman ML, Mullins MA, Gold BO, et al. Patient Sexual Orientation and Gender Identity Information Practices in Oncology. JAMA Netw Open. 2025;8(6):e2516941. doi:10.1001/jamanetworkopen.2025.16941
2. Health IT Policy Committee: recommendations to the National Coordinator for Health IT. U.S. Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT. Accessed June 23, 2025. https://www.healthit.gov/topic/federal-advisory-committees/health-it-policy-committee-recommendations-national-coordinator
3. Kamen CS, Dizon DS, Fung C, et al. State of cancer care in America: achieving cancer health equity among sexual and gender minority communities. JCO Oncol Pract. 2023;19(11):959-966. doi:10.1200/OP.23.00435