In a multi-institutional qualitative study recently published in JAMA Network Open, U.S. researchers sought to understand what drives—or limits—the systematic collection of sexual orientation and gender identity (SOGI) data in outpatient oncology settings.
National recommendations from CMS (Meaningful Use Stage 3), ASCO and the National Academies underscore the importance of SOGI data for identifying disparities and delivering patient-centred care. However, uptake in oncology remains uneven.
From September 2022 to August 2023, investigators conducted 62 interviews with clinicians, administrators, and staff across 23 U.S. cancer centres representing diverse geographic and institutional contexts, including academic versus non-academic and urban versus rural settings.
IS TISSUE THE ISSUE?
The findings revealed:
- 30% of centres systematically collected SOGI data
- 48% did so partially
- 22% did not collect these data at all
Several interrelated factors emerged as critical supports:
- External mandates: Legal or accreditation requirements—such as CMS rules or ASCO standards—were powerful motivators.
- EMR integration: Built-in, “forced” workflow steps within hit‑but‑make‑optional electronic fields helped normalise provider behaviour and reduce resistance.
- Structured fields: Discrete data entry fields (versus free-text) ensured that information could be reliably captured and used downstream.
- Perceived clinical relevance: Clinicians who saw SOGI data as relevant to care decisions—such as tailoring screening protocols or understanding risk factors—were more likely to collect it.
- Leadership endorsement: Support from top-level administrators signalled institutional priority, facilitating buy‑in across multidisciplinary teams
At centres with partial uptake, additional facilitators included local “champions,” targeted training on SOGI relevance and clinician awareness. In contrast, clinics that did not collect SOGI data cited inertia and a perceived need for formal leadership or policy mandates before initiating collection.
Despite relatively successful collection in some centres, use of that information in clinical practice remains inconsistent. Meaningful utilisation likely depends on clinician training and clear guidance on when and how SOGI data should inform decision-making—whether that’s in psychosocial support, screening strategies, or survivorship planning.
To advance equitable cancer care, oncology programs should consider:
- Establishing formal policies mandating SOGI data collection, ideally tied to external standards.
- Embedding prompts in EMRs—especially mandatory structured fields—to shift provider behaviour.
- Training providers on the relevance of SOGI identities to cancer epidemiology, treatment decisions, and psychosocial needs.
- Fostering leadership buy‑in, including designating accountability structures for collection and data use.
As clinics build infrastructures for capturing patient demographics more comprehensively, the next frontier will be translating that data into better outcomes and reduced disparities for sexual and gender minority patients. This analysis highlights that successful implementation requires addressing technical workflows and organizational culture together—and involves both the “how” of data capture and the “why” behind it.
Mandates, EMR integration, leadership support, and perceived clinical relevance are key to systematic SOGI data collection. To fully leverage these data, oncology practices should follow next steps on education and clinical integration.
Paper: 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
