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将性取向和性别认同数据纳入综合癌症中心肿瘤登记处:挑战与经验教训。

Integration of sexual orientation and gender identity data into a comprehensive cancer center tumor registry: challenges and lessons learned.

作者信息

Tipre Meghan, Winters Sharon, Kearns Andrew, Davis Michael, Gero Joy, Eckstrand Kristen, Baskin Monica L

机构信息

Department of Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, PA, United States.

UPMC Hillman Cancer Center, Pittsburgh, PA, United States.

出版信息

J Natl Cancer Inst Monogr. 2025 Jul 1;2025(69):147-152. doi: 10.1093/jncimonographs/lgaf018.

DOI:10.1093/jncimonographs/lgaf018
PMID:40671537
Abstract

BACKGROUND

Sexual and gender minorities (SGM) experience health disparities across cancer care continuum. However, inconsistent sexual orientation and gender identity (SOGI) data collection precludes measurement of the burden, and points to intervene. Comprehensive cancer centers (CCC) and their network hospitals are integrating SOGI data collection in their electronic medical records (EMRs), but significant challenges and barriers remain in data completion.

METHODS

We evaluated the completeness of SOGI data in EMRs between 2021 and 2023 for cancer registry patients from 3 of the 54 CCC network hospitals/clinics in western PA used descriptive and bivariate statistics to compare between those with completed data and those that did not.

RESULTS

Results found 12% of patients with completed SOGI data with notable differences by sex-at-birth, urban/rural status, and age. SOGI data completion rates increased each year significantly but overall remained low.

CONCLUSION

Strong leadership, culturally sensitive education of clinical, research staff and patients, routine monitoring of SOGI data, and education of SGM on self-advocacy can address some of these gaps.

摘要

背景

性少数群体和性别少数群体(SGM)在癌症治疗的整个过程中都面临健康差异。然而,性取向和性别认同(SOGI)数据收集的不一致妨碍了对负担的衡量,也无法确定干预点。综合癌症中心(CCC)及其网络医院正在将SOGI数据收集整合到其电子病历(EMR)中,但在数据完整性方面仍存在重大挑战和障碍。

方法

我们评估了2021年至2023年宾夕法尼亚州西部54家CCC网络医院/诊所中3家的癌症登记患者电子病历中SOGI数据的完整性,使用描述性和双变量统计方法比较了数据完整的患者和数据不完整的患者。

结果

结果发现12%的患者SOGI数据完整,按出生时性别、城乡状况和年龄存在显著差异。SOGI数据完成率每年显著提高,但总体仍较低。

结论

强有力的领导、对临床、研究人员和患者进行文化敏感教育、对SOGI数据进行常规监测以及对SGM进行自我倡导教育可以弥补其中一些差距。

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J Natl Cancer Inst Monogr. 2025 Jul 1;2025(69):147-152. doi: 10.1093/jncimonographs/lgaf018.
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