Sexual Orientation and Gender Identity Data Collection in Oncology Practice: Findings of an ASCO Survey

Authors

Charles S Kamen
Mandi L Pratt-Chapman
Stephen C Meersman
Gwendolyn P Quinn
Matthew B Schabath
Shail Maingi
Janette K Merrill
Elizabeth Garrett-Mayer
Melinda Kaltenbaugh
Caroline Schenkel
Shine Chang

Publication Date

8-1-2022

Journal

JCO Oncology Practice

Abstract

Purpose: Lack of collection of sexual orientation and gender identity (SOGI) data in oncology practices limits assessment of sexual and gender minority (SGM) cancer patients' experiences and restricts opportunities to improve health outcomes of SGM patients. Despite national calls for routine SOGI data collection, individual-level and institutional barriers hinder progress. This study aimed to identify these barriers in oncology.

Methods: An online survey of ASCO members and others assessed SOGI data collection in oncology practices, institutional characteristics related to SOGI data collection, respondents' attitudes about SOGI data and SGM patients, and respondent demographics. Logistic regression calculated adjusted odds ratios (ORs) and 95% CIs for factors associated with sexual orientation (SO) and gender identity (GI) data collection.

Results: Less than half of 257 respondents reported institutional SO and GI data collection (40% and 46%, respectively), whereas over a third reported no institutional data collection (34% and 32%, respectively) and the remainder were unsure (21% and 17%, respectively). Most respondents felt that knowing both SO and GI was important for quality care (77% and 85%, respectively). Collection of SO and GI was significantly associated in separate models with leadership support (ORs = 8.01 and 6.02, respectively), having resources for SOGI data collection (ORs = 10.6 and 18.7, respectively), and respondents' belief that knowing patient SO and GI is important (ORs = 4.28 and 2.76, respectively). Themes from qualitative comments mirrored the key factors identified in our quantitative analysis.

Conclusion: Three self-reinforcing factors emerged as critical drivers for collecting SOGI data: leadership support, dedicated resources, and individual respondents' attitudes. Policy mandates, implementation science, and clinical reimbursement are strategies to advance meaningful data collection and use in clinical practice.

Keywords

Female, Gender Identity, Humans, Male, Medical Oncology, Sexual Behavior, Sexual and Gender Minorities, Surveys and Questionnaires

DOI

10.1200/OP.22.00084

PMID

35605183

PMCID

PMC9377687

PubMedCentral® Posted Date

5-23-2022

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes