Identification of Transgender People With Cancer in Electronic Health Records: Recommendations Based on CancerLinQ
Ash B Alpert1, George A Komatsoulis2, Stephen C Meersman3
1Division of Hematology and Medical Oncology, Department of Medicine, Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY.
JCO Oncology Practice
|March 11, 2021
Summary
Identifying transgender individuals with cancer is challenging due to a lack of routine gender identity data collection. Current methods using clinical data show low identification rates, highlighting the need for prospective data collection.
Area of Science:
- Oncology
- Health Disparities
- Informatics
Background:
- Understanding cancer prevalence and outcomes in transgender populations is crucial for addressing health disparities.
- Routinely collected gender identity data are lacking, significantly hindering research in transgender cancer patients.
- CancerLinQ, a clinical oncology database, aggregates data from US electronic health records.
Purpose of the Study:
- To evaluate methods for identifying transgender individuals with cancer within the CancerLinQ database.
- To assess the prevalence of transgender cancer patients using existing clinical data and diagnostic codes.
Main Methods:
- Utilized three criteria to identify potential transgender patients: diagnosis codes, gender/cancer type combinations.
- Confirmed transgender identity through chart abstraction for a subset of identified cases.
- Applied identified criteria to the CancerLinQ database, comprising approximately 1.3 million patients.
Main Results:
- Of 557 cases meeting inclusion criteria, 242 were abstracted.
- Seventy-six percent of patients with transgender-suggestive diagnosis codes were confirmed as transgender.
- Only 2-3% of individuals identified via gender/cancer type criteria were confirmed as transgender, indicating low yield.
Conclusions:
- Current methods for identifying transgender cancer patients in large clinical databases have limited success.
- Prospective, systematic collection of gender identity data is essential for accurate research on transgender cancer.
- Creating safe healthcare environments is critical to encourage data sharing and improve care for transgender individuals.
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