Using clinician text notes in electronic medical record data to validate transgender-related diagnosis codes

Transgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical records (EMRs), lack standardized collection of gender identity information. Most EMR do not include the gold standard of self-identified gender...

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Published inJournal of the American Medical Informatics Association : JAMIA Vol. 25; no. 7; pp. 905 - 908
Main Authors Blosnich, John R, Cashy, John, Gordon, Adam J, Shipherd, Jillian C, Kauth, Michael R, Brown, George R, Fine, Michael J
Format Journal Article
LanguageEnglish
Published England Oxford University Press 01.07.2018
Subjects
Online AccessGet full text
ISSN1067-5027
1527-974X
1527-974X
DOI10.1093/jamia/ocy022

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Abstract Transgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical records (EMRs), lack standardized collection of gender identity information. Most EMR do not include the gold standard of self-identified gender identity, but International Classification of Diseases (ICDs) includes diagnostic codes indicating transgender-related clinical services. However, it is unclear if these codes can indicate transgender status. The objective of this study was to determine the extent to which patients' clinician notes in EMR contained transgender-related terms that could corroborate ICD-coded transgender identity. Data are from the US Department of Veterans Affairs Corporate Data Warehouse. Transgender patients were defined by the presence of ICD9 and ICD10 codes associated with transgender-related clinical services, and a 3:1 comparison group of nontransgender patients was drawn. Patients' clinician text notes were extracted and searched for transgender-related words and phrases. Among 7560 patients defined as transgender based on ICD codes, the search algorithm identified 6753 (89.3%) with transgender-related terms. Among 22 072 patients defined as nontransgender without ICD codes, 246 (1.1%) had transgender-related terms; after review, 11 patients were identified as transgender, suggesting a 0.05% false negative rate. Using ICD-defined transgender status can facilitate health services research when self-identified gender identity data are not available in EMR.
AbstractList Transgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical records (EMRs), lack standardized collection of gender identity information. Most EMR do not include the gold standard of self-identified gender identity, but International Classification of Diseases (ICDs) includes diagnostic codes indicating transgender-related clinical services. However, it is unclear if these codes can indicate transgender status. The objective of this study was to determine the extent to which patients' clinician notes in EMR contained transgender-related terms that could corroborate ICD-coded transgender identity. Data are from the US Department of Veterans Affairs Corporate Data Warehouse. Transgender patients were defined by the presence of ICD9 and ICD10 codes associated with transgender-related clinical services, and a 3:1 comparison group of nontransgender patients was drawn. Patients' clinician text notes were extracted and searched for transgender-related words and phrases. Among 7560 patients defined as transgender based on ICD codes, the search algorithm identified 6753 (89.3%) with transgender-related terms. Among 22 072 patients defined as nontransgender without ICD codes, 246 (1.1%) had transgender-related terms; after review, 11 patients were identified as transgender, suggesting a 0.05% false negative rate. Using ICD-defined transgender status can facilitate health services research when self-identified gender identity data are not available in EMR.
Transgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical records (EMRs), lack standardized collection of gender identity information. Most EMR do not include the gold standard of self-identified gender identity, but International Classification of Diseases (ICDs) includes diagnostic codes indicating transgender-related clinical services. However, it is unclear if these codes can indicate transgender status. The objective of this study was to determine the extent to which patients' clinician notes in EMR contained transgender-related terms that could corroborate ICD-coded transgender identity.ObjectiveTransgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical records (EMRs), lack standardized collection of gender identity information. Most EMR do not include the gold standard of self-identified gender identity, but International Classification of Diseases (ICDs) includes diagnostic codes indicating transgender-related clinical services. However, it is unclear if these codes can indicate transgender status. The objective of this study was to determine the extent to which patients' clinician notes in EMR contained transgender-related terms that could corroborate ICD-coded transgender identity.Data are from the US Department of Veterans Affairs Corporate Data Warehouse. Transgender patients were defined by the presence of ICD9 and ICD10 codes associated with transgender-related clinical services, and a 3:1 comparison group of nontransgender patients was drawn. Patients' clinician text notes were extracted and searched for transgender-related words and phrases.MethodsData are from the US Department of Veterans Affairs Corporate Data Warehouse. Transgender patients were defined by the presence of ICD9 and ICD10 codes associated with transgender-related clinical services, and a 3:1 comparison group of nontransgender patients was drawn. Patients' clinician text notes were extracted and searched for transgender-related words and phrases.Among 7560 patients defined as transgender based on ICD codes, the search algorithm identified 6753 (89.3%) with transgender-related terms. Among 22 072 patients defined as nontransgender without ICD codes, 246 (1.1%) had transgender-related terms; after review, 11 patients were identified as transgender, suggesting a 0.05% false negative rate.ResultsAmong 7560 patients defined as transgender based on ICD codes, the search algorithm identified 6753 (89.3%) with transgender-related terms. Among 22 072 patients defined as nontransgender without ICD codes, 246 (1.1%) had transgender-related terms; after review, 11 patients were identified as transgender, suggesting a 0.05% false negative rate.Using ICD-defined transgender status can facilitate health services research when self-identified gender identity data are not available in EMR.ConclusionsUsing ICD-defined transgender status can facilitate health services research when self-identified gender identity data are not available in EMR.
Author Cashy, John
Blosnich, John R
Kauth, Michael R
Shipherd, Jillian C
Fine, Michael J
Gordon, Adam J
Brown, George R
AuthorAffiliation 11 Mountain Home VA Medical Center, Mountain Home, TN, 37684, USA
4 LGBT Health Program, Office of Patient Care Services, Department of Veterans Affairs, Washington, DC, 20420, USA
8 Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, Houston, TX, 77030, USA
6 Department of Psychiatry, Boston University, Boston, MA, 02118. USA
1 Center for Health Equity Research and Promotion, VA Pittsburgh Healthcare System, Pittsburgh, PA, 15240, USA
3 MIRECC, VA Pittsburgh Healthcare System, Pittsburgh, PA, 15213, USA
9 Houston VA HSR&D Center for Innovations in Quality, Effectiveness and Safety, Houston, TX, 77021, USA
2 Division of General Internal Medicine, School of Medicine, University of Pittsburgh, Pittsburgh, PA, 15213, USA
5 VA Boston Healthcare System, National Center for PTSD, Women’s Health Sciences Division, Boston, MA, 02130, USA
7 South Central MIRECC, Michael E. DeBakey VA Medical Center, Houston, TX, 77030, USA
10 Department of Psychiatry and Behavioral Sciences, Eas
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BackLink https://www.ncbi.nlm.nih.gov/pubmed/29635362$$D View this record in MEDLINE/PubMed
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Snippet Transgender individuals are vulnerable to negative health risks and outcomes, but research remains limited because data sources, such as electronic medical...
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SubjectTerms Algorithms
Brief Communication
Electronic Health Records
Female
Gender Identity
Health Services Research
Humans
International Classification of Diseases
Male
Transgender Persons - classification
Title Using clinician text notes in electronic medical record data to validate transgender-related diagnosis codes
URI https://www.ncbi.nlm.nih.gov/pubmed/29635362
https://www.proquest.com/docview/2024019126
https://pubmed.ncbi.nlm.nih.gov/PMC7647015
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