OBJECTIVES: Despite federally mandated collection of sex and gender demographics in the electronic health record (EHR), longitudinal assessments are lacking. We assessed sex and gender demographic field utilization using EHR metadata. MATERIALS AND METHODS: Patients ≥18 years of age in the Mass General Brigham health system with a first Legal Sex entry (registration requirement) between January 8, 2018 and January 1, 2022 were included in this retrospective study. Metadata for all sex and gender fields (Legal Sex, Sex Assigned at Birth [SAAB], Gender Identity) were quantified by completion rates, user types, and longitudinal change. A nested qualitative study of providers from specialties with high and low field use identified themes related to utilization. RESULTS: 1 576 120 patients met inclusion criteria: 100% had a Legal Sex, 20% a Gender Identity, and 19% a SAAB; 321 185 patients had field changes other than initial Legal Sex entry. About 2% of patients had a subsequent Legal Sex change, and 25% of those had ≥2 changes; 20% of patients had ≥1 update to Gender Identity and 19% to SAAB. Excluding the first Legal Sex entry, administrators made most changes (67%) across all fields, followed by patients (25%), providers (7.2%), and automated Health Level-7 (HL7) interface messages (0.7%). Provider utilization varied by subspecialty; themes related to systems barriers and personal perceptions were identified. DISCUSSION: Sex and gender demographic fields are primarily used by administrators and raise concern about data accuracy; provider use is heterogenous and lacking. Provider awareness of field availability and variable workflows may impede use. CONCLUSION: EHR metadata highlights areas for improvement of sex and gender field utilization.

OBJECTIVE: Social media-based public health research is crucial for epidemic surveillance, but most studies identify relevant corpora with keyword-matching. This study develops a system to streamline the process of curating colloquial medical dictionaries. We demonstrate the pipeline by curating a Unified Medical Language System (UMLS)-colloquial symptom dictionary from COVID-19-related tweets as proof of concept. METHODS: COVID-19-related tweets from February 1, 2020, to April 30, 2022 were used. The pipeline includes three modules: a named entity recognition module to detect symptoms in tweets; an entity normalization module to aggregate detected entities; and a mapping module that iteratively maps entities to Unified Medical Language System concepts. A random 500 entity samples were drawn from the final dictionary for accuracy validation. Additionally, we conducted a symptom frequency distribution analysis to compare our dictionary to a pre-defined lexicon from previous research. RESULTS: We identified 498 480 unique symptom entity expressions from the tweets. Pre-processing reduces the number to 18 226. The final dictionary contains 38 175 unique expressions of symptoms that can be mapped to 966 UMLS concepts (accuracy = 95%). Symptom distribution analysis found that our dictionary detects more symptoms and is effective at identifying psychiatric disorders like anxiety and depression, often missed by pre-defined lexicons. CONCLUSIONS: This study advances public health research by implementing a novel, systematic pipeline for curating symptom lexicons from social media data. The final lexicon's high accuracy, validated by medical professionals, underscores the potential of this methodology to reliably interpret, and categorize vast amounts of unstructured social media data into actionable medical insights across diverse linguistic and regional landscapes.

OBJECTIVE: To determine user and electronic health records (EHR) integration requirements for a scalable remote symptom monitoring intervention for asthma patients and their providers. METHODS: Guided by the Non-Adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework, we conducted a user-centered design process involving English- and Spanish-speaking patients and providers affiliated with an academic medical center. We conducted a secondary analysis of interview transcripts from our prior study, new design sessions with patients and primary care providers (PCPs), and a survey of PCPs. We determined EHR integration requirements as part of the asthma app design and development process. RESULTS: Analysis of 26 transcripts (21 patients, 5 providers) from the prior study, 21 new design sessions (15 patients, 6 providers), and survey responses from 55 PCPs (71% of 78) identified requirements. Patient-facing requirements included: 1- or 5-item symptom questionnaires each week, depending on asthma control; option to request a callback; ability to enter notes, triggers, and peak flows; and tips pushed via the app prior to a clinic visit. PCP-facing requirements included a clinician-facing dashboard accessible from the EHR and an EHR inbox message preceding the visit. PCP preferences diverged regarding graphical presentations of patient-reported outcomes (PROs). Nurse-facing requirements included callback requests sent as an EHR inbox message. Requirements were consistent for English- and Spanish-speaking patients. EHR integration required use of custom application programming interfaces (APIs). CONCLUSION: Using the NASSS framework to guide our user-centered design process, we identified patient and provider requirements for scaling an EHR-integrated remote symptom monitoring intervention in primary care. These requirements met the needs of patients and providers. Additional standards for PRO displays and EHR inbox APIs are needed to facilitate spread.