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Most digital health systems (DHS) are unable to capture gender, sex, and sexual orientation (GSSO) data beyond a single binary attribute with female and male options. This binary system discourages access to preventative screening and gender-affirming care for sexual and gender minority (SGM) people. We conducted this 1-year multi-method project and cocreated an action plan to modernize GSSO information practices in Canadian DHS. The proposed actions are to: (1) Envisage [...]

Transgender people experience harassment, denial of services, and physical assault during healthcare visits. Electronic health record (EHR) structure and language can exacerbate the harm they experience by using transphobic terminology, emphasizing binary genders, and pathologizing transness. Here, we investigate the ways in which SNOMED CT and ICD-10-CM record gender-related terminology and explore their shortcomings as they contribute to this EHR-mediated violence. We discuss how this "standardized" gender-related medical terminology pathologizes [...]

We aimed to establish a comprehensive digital phenotype for postpartum hemorrhage (PPH). Current guidelines rely primarily on estimates of blood loss, which can be inaccurate and biased and ignore complementary information readily available in electronic medical records (EMR). Inaccurate and incomplete phenotyping contributes to ongoing challenges in tracking PPH outcomes, developing more accurate risk assessments, and identifying novel interventions.

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility [...]

The purpose of this study was to measure the association between neighborhood deprivation and cesarean delivery following labor induction among people delivering at term (≥37 weeks of gestation).

Data on the safety and effectiveness of contraception among women with rare diseases are critical and sorely lacking. To fill this gap, we propose a national, patient-driven database that tracks contraceptive safety and effectiveness among women with rare diseases. We built a pilot database focusing on women with cystic fibrosis in 3 phases: (1) database design input from patients and experts, (2) merging of contraceptive survey data with relevant clinical outcomes [...]

The study sought to develop and apply a framework that uses a clinical phenotyping tool to assess risk for recurrent preterm birth.

Two-step questions to assess gender identity are recommended for optimizing care delivery for gender-diverse individuals. As gender identity fields are increasingly integrated into electronic health records, guidance is needed on how to analyze these data. The goal of this study was to assess potential approaches for analyzing 2-step gender identity questions and the impact of each on suicidal ideation.

Postpartum hemorrhage (PPH) remains a leading cause of preventable maternal mortality in the United States. We sought to develop a novel risk assessment tool and compare its accuracy to tools used in current practice.