Journal of the American Medical Informatics Association最新文献

{"title":"Patterns of willingness to share health data with key stakeholders in US consumers: a latent class analysis.","authors":"Ashwini Nagappan, Xi Zhu","doi":"10.1093/jamia/ocaf014","DOIUrl":"https://doi.org/10.1093/jamia/ocaf014","url":null,"abstract":"<p><strong>Objective: </strong>To identify distinct patterns in consumer willingness to share health data with various stakeholders and analyze characteristics across consumer groups.</p><p><strong>Materials and methods: </strong>Data from the Rock Health Digital Health Consumer Adoption Survey from 2018, 2019, 2020, and 2022 were analyzed. This study comprised a Census-matched representative sample of U.S. adults. Latent class analysis (LCA) identified groups of respondents with similar data-sharing attitudes. Groups were compared by sociodemographics, health status, and digital health utilization.</p><p><strong>Results: </strong>We identified three distinct LCA groups: (1) Wary (36.8%), (2) Discerning (47.9%), and (3) Permissive (15.3%). The Wary subgroup exhibited reluctance to share health data with any stakeholder, with predicted probabilities of willingness to share ranging from 0.07 for pharmaceutical companies to 0.34 for doctors/clinicians. The Permissive group showed a high willingness, with predicted probabilities greater than 0.75 for most stakeholders except technology companies and government organizations. The Discerning group was selective, willing to share with healthcare-related entities and family (predicted probabilities >0.62), but reluctant to share with other stakeholders (predicted probabilities <0.29). Individual characteristics were associated with LCA group membership.</p><p><strong>Discussion: </strong>Findings highlight a persistent trust in traditional healthcare providers. However, the varying willingness to share with non-traditional stakeholders suggests that while some consumers are open to sharing, others remain hesitant and selective. Data privacy policies and practices need to recognize and respond to multifaceted and stakeholder-specific attitudes.</p><p><strong>Conclusion: </strong>LCA reveals significant heterogeneity in health data-sharing attitudes among U.S. consumers, providing insights to inform the development of data privacy policies.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143054082","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Communication-efficient federated learning of temporal effects on opioid use disorder with data from distributed research networks.","authors":"C Jason Liang, Chongliang Luo, Henry R Kranzler, Jiang Bian, Yong Chen","doi":"10.1093/jamia/ocae313","DOIUrl":"https://doi.org/10.1093/jamia/ocae313","url":null,"abstract":"<p><strong>Objective: </strong>To develop a distributed algorithm to fit multi-center Cox regression models with time-varying coefficients to facilitate privacy-preserving data integration across multiple health systems.</p><p><strong>Materials and methods: </strong>The Cox model with time-varying coefficients relaxes the proportional hazards assumption of the usual Cox model and is particularly useful to model time-to-event outcomes. We proposed a One-shot Distributed Algorithm to fit multi-center Cox regression models with Time varying coefficients (ODACT). This algorithm constructed a surrogate likelihood function to approximate the Cox partial likelihood function, using patient-level data from a lead site and aggregated data from other sites. The performance of ODACT was demonstrated by simulation and a real-world study of opioid use disorder (OUD) using decentralized data from a large clinical research network across 5 sites with 69 163 subjects.</p><p><strong>Results: </strong>The ODACT method precisely estimated the time-varying effects over time. In the simulation study, ODACT always achieved estimation close to that of the pooled analysis, while the meta-estimator showed considerable amount of bias. In the OUD study, the bias of the estimated hazard ratios by ODACT are smaller than those of the meta-estimator for all 7 risk factors at almost all of the time points from 0 to 2.5 years. The greatest bias of the meta-estimator was for the effects of age ≥65 years, and smoking.</p><p><strong>Conclusion: </strong>ODACT is a privacy-preserving and communication-efficient method for analyzing multi-center time-to-event data which allows the covariates' effects to be time-varying. ODACT provides estimates close to the pooled estimator and substantially outperforms the meta-analysis estimator.</p><p><strong>Discussion: </strong>The proposed ODACT is a privacy-preserving distributed algorithm for fitting Cox models with time-varying coefficients. The limitations of ODACT include that privacy-preserving via aggregate data does rely on relatively large number of data at each individual site, and rigorous quantification of the risk of privacy leaks requires further investigation.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143048666","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Machine-learning based risk prediction of outcomes in patients hospitalised with COVID-19 in Australia: the AUS-COVID score.","authors":"Hari P Sritharan, Harrison Nguyen, William van Gaal, Leonard Kritharides, Clara K Chow, Ravinay Bhindi","doi":"10.1093/jamia/ocaf016","DOIUrl":"https://doi.org/10.1093/jamia/ocaf016","url":null,"abstract":"<p><strong>Objective: </strong>We aimed to develop a highly interpretable and effective, machine-learning based risk prediction algorithm to predict in-hospital mortality, intubation and adverse cardiovascular events in patients hospitalised with COVID-19 in Australia (AUS-COVID Score).</p><p><strong>Materials and methods: </strong>This prospective study across 21 hospitals included 1714 consecutive patients aged ≥ 18 in their index hospitalization with COVID-19. The dataset was separated into training (80%) and test sets (20%). Eight supervised ML methods were used: LASSO, ridge, elastic net (EN), decision tree, support vector machine, random forest, AdaBoost and gradient boosting. A feature selection method was used to establish informative variables, which were considered in groups of 5/10/15/20/all. The final model was selected by balancing the optimal area under the curve (AUC) score with interpretability, through the number of included variables. The coefficients of the final models were used to build the AUS-COVID Score.</p><p><strong>Results & discussion: </strong>Among the patients, 181 (10.6%) died in-hospital, 148 (8.6%) required intubation and 90 (5.3%) had adverse cardiovascular events. The LASSO model performed best for predicting in-hospital mortality (AUC 0.85) using five variables: age, respiratory rate, COVID-19 features on chest X-ray (CXR), troponin elevation, and COVID-19 vaccination (≥1 dose). The Elastic Net model performed best for predicting intubation (AUC 0.75) and adverse cardiovascular events (AUC 0.64), each with five variables. A user-friendly web-based application was built for clinician use at the bedside.</p><p><strong>Conclusion: </strong>The AUS-COVID Score is an accurate and practical, machine-learning-based risk score to predict in-hospital mortality, intubation, and adverse cardiovascular events in hospitalized COVID-19 patients.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143043172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"VIEWER: an extensible visual analytics framework for enhancing mental healthcare.","authors":"Tao Wang, David Codling, Yamiko Joseph Msosa, Matthew Broadbent, Daisy Kornblum, Catherine Polling, Thomas Searle, Claire Delaney-Pope, Barbara Arroyo, Stuart MacLellan, Zoe Keddie, Mary Docherty, Angus Roberts, Robert Stewart, Philip McGuire, Richard Dobson, Robert Harland","doi":"10.1093/jamia/ocaf010","DOIUrl":"https://doi.org/10.1093/jamia/ocaf010","url":null,"abstract":"<p><strong>Objective: </strong>A proof-of-concept study aimed at designing and implementing Visual & Interactive Engagement With Electronic Records (VIEWER), a versatile toolkit for visual analytics of clinical data, and systematically evaluating its effectiveness across various clinical applications while gathering feedback for iterative improvements.</p><p><strong>Materials and methods: </strong>VIEWER is an open-source and extensible toolkit that employs natural language processing and interactive visualization techniques to facilitate the rapid design, development, and deployment of clinical information retrieval, analysis, and visualization at the point of care. Through an iterative and collaborative participatory design approach, VIEWER was designed and implemented in one of the United Kingdom's largest National Health Services mental health Trusts, where its clinical utility and effectiveness were assessed using both quantitative and qualitative methods.</p><p><strong>Results: </strong>VIEWER provides interactive, problem-focused, and comprehensive views of longitudinal patient data (n = 409 870) from a combination of structured clinical data and unstructured clinical notes. Despite a relatively short adoption period and users' initial unfamiliarity, VIEWER significantly improved performance and task completion speed compared to the standard clinical information system. More than 1000 users and partners in the hospital tested and used VIEWER, reporting high satisfaction and expressed strong interest in incorporating VIEWER into their daily practice.</p><p><strong>Discussion: </strong>VIEWER provides a cost-effective enhancement to the functionalities of standard clinical information systems, with evaluation offering valuable feedback for future improvements.</p><p><strong>Conclusion: </strong>VIEWER was developed to improve data accessibility and representation across various aspects of healthcare delivery, including population health management and patient monitoring. The deployment of VIEWER highlights the benefits of collaborative refinement in optimizing health informatics solutions for enhanced patient care.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143030081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Collaborative large language models for automated data extraction in living systematic reviews.","authors":"Muhammad Ali Khan, Umair Ayub, Syed Arsalan Ahmed Naqvi, Kaneez Zahra Rubab Khakwani, Zaryab Bin Riaz Sipra, Ammad Raina, Sihan Zhou, Huan He, Amir Saeidi, Bashar Hasan, Robert Bryan Rumble, Danielle S Bitterman, Jeremy L Warner, Jia Zou, Amye J Tevaarwerk, Konstantinos Leventakos, Kenneth L Kehl, Jeanne M Palmer, Mohammad Hassan Murad, Chitta Baral, Irbaz Bin Riaz","doi":"10.1093/jamia/ocae325","DOIUrl":"10.1093/jamia/ocae325","url":null,"abstract":"<p><strong>Objective: </strong>Data extraction from the published literature is the most laborious step in conducting living systematic reviews (LSRs). We aim to build a generalizable, automated data extraction workflow leveraging large language models (LLMs) that mimics the real-world 2-reviewer process.</p><p><strong>Materials and methods: </strong>A dataset of 10 trials (22 publications) from a published LSR was used, focusing on 23 variables related to trial, population, and outcomes data. The dataset was split into prompt development (n = 5) and held-out test sets (n = 17). GPT-4-turbo and Claude-3-Opus were used for data extraction. Responses from the 2 LLMs were considered concordant if they were the same for a given variable. The discordant responses from each LLM were provided to the other LLM for cross-critique. Accuracy, ie, the total number of correct responses divided by the total number of responses, was computed to assess performance.</p><p><strong>Results: </strong>In the prompt development set, 110 (96%) responses were concordant, achieving an accuracy of 0.99 against the gold standard. In the test set, 342 (87%) responses were concordant. The accuracy of the concordant responses was 0.94. The accuracy of the discordant responses was 0.41 for GPT-4-turbo and 0.50 for Claude-3-Opus. Of the 49 discordant responses, 25 (51%) became concordant after cross-critique, increasing accuracy to 0.76.</p><p><strong>Discussion: </strong>Concordant responses by the LLMs are likely to be accurate. In instances of discordant responses, cross-critique can further increase the accuracy.</p><p><strong>Conclusion: </strong>Large language models, when simulated in a collaborative, 2-reviewer workflow, can extract data with reasonable performance, enabling truly \"living\" systematic reviews.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143015012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interdisciplinary systems may restore the healthcare professional-patient relationship in electronic health systems.","authors":"Michael R Cauley, Richard J Boland, S Trent Rosenbloom","doi":"10.1093/jamia/ocaf001","DOIUrl":"10.1093/jamia/ocaf001","url":null,"abstract":"<p><strong>Objective: </strong>To develop a framework that models the impact of electronic health record (EHR) systems on healthcare professionals' well-being and their relationships with patients, using interdisciplinary insights to guide machine learning in identifying value patterns important to healthcare professionals in EHR systems.</p><p><strong>Materials and methods: </strong>A theoretical framework of EHR systems' implementation was developed using interdisciplinary literature from healthcare, information systems, and management science focusing on the systems approach, clinical decision-making, and interface terminologies.</p><p><strong>Observations: </strong>Healthcare professionals balance personal norms of narrative and data-driven communication in knowledge creation for EHRs by integrating detailed patient stories with structured data. This integration forms 2 learning loops that create tension in the healthcare professional-patient relationship, shaping how healthcare professionals apply their values in care delivery. The manifestation of this value tension in EHRs directly affects the well-being of healthcare professionals.</p><p><strong>Discussion: </strong>Understanding the value tension learning loop between structured data and narrative forms lays the groundwork for future studies of how healthcare professionals use EHRs to deliver care, emphasizing their well-being and patient relationships through a sociotechnical lens.</p><p><strong>Conclusion: </strong>EHR systems can improve the healthcare professional-patient relationship and healthcare professional well-being by integrating norms and values into pattern recognition of narrative and data communication forms.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143015034","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Improving large language model applications in biomedicine with retrieval-augmented generation: a systematic review, meta-analysis, and clinical development guidelines.","authors":"Siru Liu, Allison B McCoy, Adam Wright","doi":"10.1093/jamia/ocaf008","DOIUrl":"https://doi.org/10.1093/jamia/ocaf008","url":null,"abstract":"<p><strong>Objective: </strong>The objectives of this study are to synthesize findings from recent research of retrieval-augmented generation (RAG) and large language models (LLMs) in biomedicine and provide clinical development guidelines to improve effectiveness.</p><p><strong>Materials and methods: </strong>We conducted a systematic literature review and a meta-analysis. The report was created in adherence to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 analysis. Searches were performed in 3 databases (PubMed, Embase, PsycINFO) using terms related to \"retrieval augmented generation\" and \"large language model,\" for articles published in 2023 and 2024. We selected studies that compared baseline LLM performance with RAG performance. We developed a random-effect meta-analysis model, using odds ratio as the effect size.</p><p><strong>Results: </strong>Among 335 studies, 20 were included in this literature review. The pooled effect size was 1.35, with a 95% confidence interval of 1.19-1.53, indicating a statistically significant effect (P = .001). We reported clinical tasks, baseline LLMs, retrieval sources and strategies, as well as evaluation methods.</p><p><strong>Discussion: </strong>Building on our literature review, we developed Guidelines for Unified Implementation and Development of Enhanced LLM Applications with RAG in Clinical Settings to inform clinical applications using RAG.</p><p><strong>Conclusion: </strong>Overall, RAG implementation showed a 1.35 odds ratio increase in performance compared to baseline LLMs. Future research should focus on (1) system-level enhancement: the combination of RAG and agent, (2) knowledge-level enhancement: deep integration of knowledge into LLM, and (3) integration-level enhancement: integrating RAG systems within electronic health records.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142985309","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An examination of ambulatory care code specificity utilization in ICD-10-CM compared to ICD-9-CM: implications for ICD-11 implementation.","authors":"Susan H Fenton, Cassandra Ciminello, Vickie M Mays, Mary H Stanfill, Valerie Watzlaf","doi":"10.1093/jamia/ocaf003","DOIUrl":"https://doi.org/10.1093/jamia/ocaf003","url":null,"abstract":"<p><strong>Objective: </strong>The ICD-10-CM classification system contains more specificity than its predecessor ICD-9-CM. A stated reason for transitioning to ICD-10-CM was to increase the availability of detailed data. This study aims to determine whether the increased specificity contained in ICD-10-CM is utilized in the ambulatory care setting and inform an evidence-based approach to evaluate ICD-11 content for implementation planning in the United States.</p><p><strong>Materials and methods: </strong>Diagnosis codes and text descriptions were extracted from a 25% random sample of the IQVIA Ambulatory EMR-US database for 2014 (ICD-9-CM, n = 14 327 155) and 2019 (ICD-10-CM, n = 13 062 900). Code utilization data was analyzed for the total and unique number of codes. Frequencies and tests of significance determined the percentage of available codes utilized and the unspecified code rates for both code sets in each year.</p><p><strong>Results: </strong>Only 44.6% of available ICD-10-CM codes were used compared to 91.5% of available ICD-9-CM codes. Of the total codes used, 14.5% ICD-9-CM codes were unspecified, while 33.3% ICD-10-CM codes were unspecified.</p><p><strong>Discussion: </strong>Even though greater detail is available, a 108.5% increase in using unspecified codes with ICD-10-CM was found. The utilization data analyzed in this study does not support a rationale for the large increase in the number of codes in ICD-10-CM. New technologies and methods are likely needed to fully utilize detailed classification systems.</p><p><strong>Conclusion: </strong>These results help evaluate the content needed in the United States national ICD standard. This analysis of codes in the current ICD standard is important for ICD-11 evaluation, implementation, and use.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142973003","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Smart Imitator: Learning from Imperfect Clinical Decisions.","authors":"Dilruk Perera, Siqi Liu, Kay Choong See, Mengling Feng","doi":"10.1093/jamia/ocae320","DOIUrl":"https://doi.org/10.1093/jamia/ocae320","url":null,"abstract":"<p><strong>Objectives: </strong>This study introduces Smart Imitator (SI), a 2-phase reinforcement learning (RL) solution enhancing personalized treatment policies in healthcare, addressing challenges from imperfect clinician data and complex environments.</p><p><strong>Materials and methods: </strong>Smart Imitator's first phase uses adversarial cooperative imitation learning with a novel sample selection schema to categorize clinician policies from optimal to nonoptimal. The second phase creates a parameterized reward function to guide the learning of superior treatment policies through RL. Smart Imitator's effectiveness was validated on 2 datasets: a sepsis dataset with 19 711 patient trajectories and a diabetes dataset with 7234 trajectories.</p><p><strong>Results: </strong>Extensive quantitative and qualitative experiments showed that SI significantly outperformed state-of-the-art baselines in both datasets. For sepsis, SI reduced estimated mortality rates by 19.6% compared to the best baseline. For diabetes, SI reduced HbA1c-High rates by 12.2%. The learned policies aligned closely with successful clinical decisions and deviated strategically when necessary. These deviations aligned with recent clinical findings, suggesting improved outcomes.</p><p><strong>Discussion: </strong>Smart Imitator advances RL applications by addressing challenges such as imperfect data and environmental complexities, demonstrating effectiveness within the tested conditions of sepsis and diabetes. Further validation across diverse conditions and exploration of additional RL algorithms are needed to enhance precision and generalizability.</p><p><strong>Conclusion: </strong>This study shows potential in advancing personalized healthcare learning from clinician behaviors to improve treatment outcomes. Its methodology offers a robust approach for adaptive, personalized strategies in various complex and uncertain environments.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":""},"PeriodicalIF":4.7,"publicationDate":"2025-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142962554","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Linking national primary care electronic health records to individual records from the U.S. Census Bureau's American Community Survey: evaluating the likelihood of linkage based on patient health.","authors":"Aubrey Limburg, Nicole Gladish, David H Rehkopf, Robert L Phillips, Victoria Udalova","doi":"10.1093/jamia/ocae269","DOIUrl":"10.1093/jamia/ocae269","url":null,"abstract":"<p><strong>Objectives: </strong>To evaluate the likelihood of linking electronic health records (EHRs) to restricted individual-level American Community Survey (ACS) data based on patient health condition.</p><p><strong>Materials and methods: </strong>Electronic health records (2019-2021) are derived from a primary care registry collected by the American Board of Family Medicine. These data were assigned anonymized person-level identifiers (Protected Identification Keys [PIKs]) at the U.S. Census Bureau. These records were then linked to restricted individual-level data from the ACS (2005-2022). We used logistic regressions to evaluate match rates for patients with health conditions across a range of severity: hypertension, diabetes, and chronic kidney disease.</p><p><strong>Results: </strong>Among more than 2.8 million patients, 99.2% were assigned person-level identifiers (PIKs). There were some differences in the odds of receiving an identifier in adjusted models for patients with hypertension (OR = 1.70, 95% CI: 1.63, 1.77) and diabetes (OR = 1.17, 95% CI: 1.13, 1.22), relative to those without. There were only small differences in the odds of matching to ACS in adjusted models for patients with hypertension (OR = 1.03, 95% CI: 1.03, 1.04), diabetes (OR = 1.02, 95% CI: 1.01, 1.03), and chronic kidney disease (OR = 1.05, 95% CI: 1.03, 1.06), relative to those without.</p><p><strong>Discussion and conclusion: </strong>Our work supports evidence-building across government consistent with the Foundations for Evidence-Based Policymaking Act of 2018 and the goal of leveraging data as a strategic asset. Given the high PIK and ACS match rates, with small differences based on health condition, our findings suggest the feasibility of enhancing the utility of EHR data for research focused on health.</p>","PeriodicalId":50016,"journal":{"name":"Journal of the American Medical Informatics Association","volume":" ","pages":"97-104"},"PeriodicalIF":4.7,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11648727/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142607321","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}