Barriers and facilitators to sexual orientation and gender identity (SOGI) data collection.
Authors: Quinn Gwendolyn P. , Pratt-Chapman Mandi L. , Meersman Steve C. , Chang Shine , Kamen Charles Stewart , Maingi Shail , Merrill Janette K. , Schabath Matthew B. 
Published: June 2021

e18520

Background: Lack of sexual orientation and gender identity (SOGI) data collection is a barrier to inclusion of sexual and gender minority (SGM) patients in oncology. ASCO, NIH, and other groups have called for collection of SOGI data and documentation of SGM health disparities as a priority for clinical care and research. However, SOGI data are not routinely collected in most cancer care settings. The purpose of this study was to examine perceived barriers and facilitators to SOGI data collection among oncology professionals and researchers. Methods: An anonymous 54-item web-based survey was distributed to ASCO members which included two opened-ended items on barriers and facilitators to SOGI data collection. The survey was also promoted on listservs (Association of Community Cancer Centers, Association of Oncology Social Workers) and social media (e.g., Twitter, LinkedIn, Facebook professional groups). Responses to the open–ended items (n = 152) were coded by three coders using content analysis and constant comparison methods. Inter-rater reliability was 0.95. Results: The majority of respondents noted individual and organizational barriers to collecting SOGI data, including Culture (no support, expressed value or awareness of need from institution); Electronic Health Record (no location for SOGI or workflow challenges); Provider Discomfort (lack of knowledge on how/why to collect SOGI data, concerns about expressed bias); Patient Discomfort (privacy concerns, mistrust, refusal); Lack of Training or Resources; and Time (insufficient time to collect). Facilitators included a need for Protocols (intake process, patient-initiated disclosure); Training (how to collect and what to do with data); Culture change (institutional and/or provider priority); and improving Community Trust (patient trust, particularly in conservative areas of the country). A few respondents were concerned about patient safety in disclosure and some respondents noted culture change would require more representation of SGM staff and “safe spaces” in oncology settings. Three respondents made negatively biased comments about SGM patients. Conclusions: Overall, specific feedback from oncology providers identified barriers to SOGI data collection and suggested facilitators to resolve them, although not all respondents expressed value for SOGI data collection. Conservative culture and lack of leadership prioritization were cultural barriers; culture change (organizational and social) was noted as a potential facilitator for SOGI data collection. While workflow challenges and lack of a place to document SOGI in the EHR were barriers, protocols for documentation and patient-led disclosure were suggested facilitators. The study supports the need for leadership, processes, structured data fields, implicit bias and cultural humility training, and reduction of stigma to respond to the ASCO and NIH call to action.