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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 present study examined the gender-specific prognostic value of blood pressure (BP) and its variability in the prediction of dementia risk and developed a score system for risk stratification.

Accurate representation of clinical sex and gender identity in interoperable clinical systems is a major challenge for organizations intent on improving outcomes for sex- and gender-marginalized people. Improved data collection has been hindered by the historical approach that presumed a single, often binary, datum was sufficient. We describe the Health Level Seven International (HL7) Gender Harmony logical model that proposes an improved approach.

The aim of this study was to examine trends in the intended users and functionalities advertised by menstrual tracking apps to identify gaps in personas and intended needs fulfilled by these technologies.

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.

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.