Department of Medical Oncology, Mayo Clinic, Rochester, MN
Elizabeth Jane Cathcart-Rake , Aminah Jatoi , Emily Van Meter Dressler , Carol A Kittel , Kathryn E. Weaver , Chandylen L Nightingale , Heather B. Neuman , Charles Stewart Kamen
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<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 < 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.
Variable | Comparison Group | Univariate | Multivariate | |||
---|---|---|---|---|---|---|
Collection Reported to Occur N (%) | Collection Reported to Not Occur N (%) | P | Odds Ratio (95% Confidence Interval) | P | ||
Gender Identity | N=157 | N=114 | ||||
Practice Group Region | Midwestern Western Northeastern Southern | 70 (45%) 32 (20%) 19 (12%) 36 (23%) | 44 (39%) 18 (16%) 7 (6%) 45 (40%) | 0.023 | REF 1.39 (0.63, 3.13) 2.08 (0.73, 5.91) 0.59 (0.30, 1.16) | 0.045 |
Percent New White Patients | 83 (17%) | 74 (22%) | 1.03 (1.02, 1.05) | <0.001 | ||
Sexual Orientation | N=112 | N=159 | ||||
Staff Dedicated to Community Outreach | 29 (25%) | 23 (14%) | 0.02 | 2.07 (1.12, 3.81) | 0.02 |
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