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1.
Biometrics ; 80(1)2024 Jan 29.
Artigo em Inglês | MEDLINE | ID: mdl-38488466

RESUMO

Electronic health records (EHRs) contain rich clinical information for millions of patients and are increasingly used for public health research. However, non-random inclusion of subjects in EHRs can result in selection bias, with factors such as demographics, socioeconomic status, healthcare referral patterns, and underlying health status playing a role. While this issue has been well documented, little work has been done to develop or apply bias-correction methods, often due to the fact that most of these factors are unavailable in EHRs. To address this gap, we propose a series of Heckman type bias correction methods by incorporating social determinants of health selection covariates to model the EHR non-random sampling probability. Through simulations under various settings, we demonstrate the effectiveness of our proposed method in correcting biases in both the association coefficient and the outcome mean. Our method augments the utility of EHRs for public health inferences, as we show by estimating the prevalence of cardiovascular disease and its correlation with risk factors in the New York City network of EHRs.


Assuntos
Registros Eletrônicos de Saúde , Nível de Saúde , Humanos , Viés de Seleção , Fatores de Risco , Viés
2.
J Biomed Inform ; 154: 104648, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38692464

RESUMO

BACKGROUND: Advances in artificial intelligence (AI) have realized the potential of revolutionizing healthcare, such as predicting disease progression via longitudinal inspection of Electronic Health Records (EHRs) and lab tests from patients admitted to Intensive Care Units (ICU). Although substantial literature exists addressing broad subjects, including the prediction of mortality, length-of-stay, and readmission, studies focusing on forecasting Acute Kidney Injury (AKI), specifically dialysis anticipation like Continuous Renal Replacement Therapy (CRRT) are scarce. The technicality of how to implement AI remains elusive. OBJECTIVE: This study aims to elucidate the important factors and methods that are required to develop effective predictive models of AKI and CRRT for patients admitted to ICU, using EHRs in the Medical Information Mart for Intensive Care (MIMIC) database. METHODS: We conducted a comprehensive comparative analysis of established predictive models, considering both time-series measurements and clinical notes from MIMIC-IV databases. Subsequently, we proposed a novel multi-modal model which integrates embeddings of top-performing unimodal models, including Long Short-Term Memory (LSTM) and BioMedBERT, and leverages both unstructured clinical notes and structured time series measurements derived from EHRs to enable the early prediction of AKI and CRRT. RESULTS: Our multimodal model achieved a lead time of at least 12 h ahead of clinical manifestation, with an Area Under the Receiver Operating Characteristic Curve (AUROC) of 0.888 for AKI and 0.997 for CRRT, as well as an Area Under the Precision Recall Curve (AUPRC) of 0.727 for AKI and 0.840 for CRRT, respectively, which significantly outperformed the baseline models. Additionally, we performed a SHapley Additive exPlanation (SHAP) analysis using the expected gradients algorithm, which highlighted important, previously underappreciated predictive features for AKI and CRRT. CONCLUSION: Our study revealed the importance and the technicality of applying longitudinal, multimodal modeling to improve early prediction of AKI and CRRT, offering insights for timely interventions. The performance and interpretability of our model indicate its potential for further assessment towards clinical applications, to ultimately optimize AKI management and enhance patient outcomes.


Assuntos
Injúria Renal Aguda , Registros Eletrônicos de Saúde , Unidades de Terapia Intensiva , Injúria Renal Aguda/terapia , Humanos , Estudos Longitudinais , Terapia de Substituição Renal , Inteligência Artificial , Previsões , Tempo de Internação , Masculino , Bases de Dados Factuais , Feminino
3.
BMC Psychiatry ; 24(1): 481, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956493

RESUMO

BACKGROUND: Patients' online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users' overall experiences with national PAEHR services. METHODS: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users' experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. RESULTS: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. CONCLUSIONS: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences.


Assuntos
Registros Eletrônicos de Saúde , Serviços de Saúde Mental , Humanos , Registros Eletrônicos de Saúde/estatística & dados numéricos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Estônia , Noruega , Finlândia , Serviços de Saúde Mental/estatística & dados numéricos , Suécia , Inquéritos e Questionários , Adulto Jovem , Idoso , Acesso dos Pacientes aos Registros , Adolescente
4.
J Med Internet Res ; 26: e53343, 2024 Mar 29.
Artigo em Inglês | MEDLINE | ID: mdl-38414056

RESUMO

BACKGROUND: Few studies have used standardized nursing records with Systematized Nomenclature of Medicine-Clinical Terms (SNOMED CT) to identify predictors of clinical deterioration. OBJECTIVE: This study aims to standardize the nursing documentation records of patients with COVID-19 using SNOMED CT and identify predictive factors of clinical deterioration in patients with COVID-19 via standardized nursing records. METHODS: In this study, 57,558 nursing statements from 226 patients with COVID-19 were analyzed. Among these, 45,852 statements were from 207 patients in the stable (control) group and 11,706 from 19 patients in the exacerbated (case) group who were transferred to the intensive care unit within 7 days. The data were collected between December 2019 and June 2022. These nursing statements were standardized using the SNOMED CT International Edition released on November 30, 2022. The 260 unique nursing statements that accounted for the top 90% of 57,558 statements were selected as the mapping source and mapped into SNOMED CT concepts based on their meaning by 2 experts with more than 5 years of SNOMED CT mapping experience. To identify the main features of nursing statements associated with the exacerbation of patient condition, random forest algorithms were used, and optimal hyperparameters were selected for nursing problems or outcomes and nursing procedure-related statements. Additionally, logistic regression analysis was conducted to identify features that determine clinical deterioration in patients with COVID-19. RESULTS: All nursing statements were semantically mapped to SNOMED CT concepts for "clinical finding," "situation with explicit context," and "procedure" hierarchies. The interrater reliability of the mapping results was 87.7%. The most important features calculated by random forest were "oxygen saturation below reference range," "dyspnea," "tachypnea," and "cough" in "clinical finding," and "oxygen therapy," "pulse oximetry monitoring," "temperature taking," "notification of physician," and "education about isolation for infection control" in "procedure." Among these, "dyspnea" and "inadequate food diet" in "clinical finding" increased clinical deterioration risk (dyspnea: odds ratio [OR] 5.99, 95% CI 2.25-20.29; inadequate food diet: OR 10.0, 95% CI 2.71-40.84), and "oxygen therapy" and "notification of physician" in "procedure" also increased the risk of clinical deterioration in patients with COVID-19 (oxygen therapy: OR 1.89, 95% CI 1.25-3.05; notification of physician: OR 1.72, 95% CI 1.02-2.97). CONCLUSIONS: The study used SNOMED CT to express and standardize nursing statements. Further, it revealed the importance of standardized nursing records as predictive variables for clinical deterioration in patients.


Assuntos
COVID-19 , Deterioração Clínica , Humanos , Registros de Enfermagem , Reprodutibilidade dos Testes , Dispneia , Oxigênio
5.
Public Health ; 233: 45-53, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38848619

RESUMO

OBJECTIVES: Variation exists in the capabilities of electronic healthcare records (EHRs) systems and the frequency of their use by primary care physicians (PCPs) from different settings. We aimed to examine the factors associated with everyday EHRs use by PCPs, characterise the EHRs features available to PCPs, and to identify the impact of practice settings on feature availability. STUDY DESIGN: Cross-sectional study. METHODS: PCPs from 20 countries completed cross-sectional online survey between June and September 2020. Responses which reported frequency of EHRs use were retained. Associations between everyday EHRs use and PCP and practice factors (country, urbanicity, and digital maturity) were explored using multivariable logistic regression analyses. The effect of practice factors on the variation in availability of ten EHRs features was estimated using Cramer's V. RESULTS: Responses from 1520 out of 1605 PCPs surveyed (94·7%) were retained. Everyday EHRs use was reported by 91·2% of PCPs. Everyday EHRs use was associated with PCPs working >28 h per week, having more years of experience using EHRs, country of employment, and higher digital maturity. EHRs features concerning entering, and retrieving data were available to most PCPs. Few PCPs reported having access to tools for 'interactive patient education' (37·3%) or 'home monitoring and self-testing of chronic conditions' (34·3%). Country of practice was associated with availability of all EHRs features (Cramer's V range: 0·2-0·6), particularly with availability of tools enabling patient EHRs access (Cramer's V: 0·6, P < 0.0001). Greater feature availability of EHRs features was observed with greater digital maturity. CONCLUSIONS: EHRs features intended for patient use were uncommon across countries and levels of digital maturity. Systems-level research is necessary to identify the country-specific barriers impeding the implementation of EHRs features in primary care, particularly of EHRs features enabling patient interaction with EHRs, to develop strategies to improve systems-wide EHRs use.


Assuntos
Registros Eletrônicos de Saúde , Atenção Primária à Saúde , Registros Eletrônicos de Saúde/estatística & dados numéricos , Estudos Transversais , Humanos , Atenção Primária à Saúde/estatística & dados numéricos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Médicos de Atenção Primária/estatística & dados numéricos , Inquéritos e Questionários
6.
Am J Kidney Dis ; 81(2): 210-221.e1, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36191726

RESUMO

RATIONALE & OBJECTIVE: The National Kidney Foundation (NKF) launched the first national US kidney disease patient registry, the NKF Patient Network, that is open to patients throughout the continuum of chronic kidney disease (CKD). The Network provides individualized education and will facilitate patient-centered research, clinical care, and health policy decisions. Here, we present the overall design and the results of a feasibility study that was conducted July through December 2020. STUDY DESIGN: Longitudinal observational cohort study of patient-entered data with or without electronic health care record (EHR) linkage in collaboration with health systems. SETTING & PARTICIPANTS: People with CKD, age≥18 years, are invited through their provider, NKF communications, or national outreach campaign. People self-enroll and share their data through a secure portal that offers individualized education and support. The first health system partner is Geisinger. EXPOSURE: Any cause and stage of CKD, including dialysis and kidney transplant recipients. OUTCOME: Feasibility of the EHR data transfer, participants' characteristics, and their perspectives on usability and content. ANALYTICAL APPROACH: Data were collected and analyzed through the registry portal powered by the Pulse Infoframe healthie 2.0 platform. RESULTS: During the feasibility study, 80 participants completed their profile, and 42 completed a satisfaction survey. Mean age was 57.5 years, 51% were women, 83% were White, and 89% were non-Hispanic or Latino. Of the participants, 60% were not aware of their level of estimated glomerular filtration rate and 91% of their urinary albumin-creatinine ratio. LIMITATIONS: Challenges for the Network are lack of awareness of kidney disease for many with CKD, difficulty in recruiting vulnerable populations or those with low digital readiness, and loss to follow-up, all leading to selection bias. CONCLUSIONS: The Network is positioned to become a national and international platform for real-world data that can inform the development of patient-centered research, care, and treatments.


Assuntos
Insuficiência Renal Crônica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Taxa de Filtração Glomerular , Rim , Testes de Função Renal , Sistema de Registros , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/terapia
7.
J Biomed Inform ; 146: 104480, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37657713

RESUMO

BACKGROUND: The use of Electronic Health Records is the most important milestone in the digitization and intelligence of the entire medical industry. AI can effectively mine the immense medical information contained in EHRs, potentially assist doctors in reducing many medical errors. OBJECTIVE: This article aims to summarize the research status and trends in using AI to mine medical information from EHRs for the past thirteen years and investigate its information application. METHODS: A systematic search was carried out in 5 databases, including Web of Science Core Collection and PubMed, to identify research using AI to mine medical information from EHRs for the past thirteen years. Furthermore, bibliometric and content analysis were used to explore the research hotspots and trends, and systematically analyze the conversion rate of research resources in this field. RESULTS: A total of 631 articles were included and analyzed. The number of published articles has increased rapidly after 2017, with an average annual growth rate of 55.73%. The US (41.68%) and China (19.65%) publish the most articles, but there is a lack of international cooperation. The extraction of disease lesions is a hot topic at present, and the research topic is gradually shifting from disease risk grading to disease risk prediction. Classification (66%), and regress (15%) are the main implemented AI tasks. For AI algorithms, deep learning (31.70%), decision tree algorithms family (26.47%), and regression algorithms family (17.43%) are used most frequently. The funding rate for publications is 69.26%, and the input-output conversion rate is 21.05%. CONCLUSIONS: Over the past decade, the use of AI to mine medical information from EHRs has been developing rapidly. However, it is necessary to strengthen international cooperation, improve EHRs data availability, focus on interpretable AI algorithms, and improve the resource conversion rate in future research.

8.
J Med Internet Res ; 25: e48145, 2023 12 06.
Artigo em Inglês | MEDLINE | ID: mdl-38055317

RESUMO

BACKGROUND: Electronic health records (EHRs) in unstructured formats are valuable sources of information for research in both the clinical and biomedical domains. However, before such records can be used for research purposes, sensitive health information (SHI) must be removed in several cases to protect patient privacy. Rule-based and machine learning-based methods have been shown to be effective in deidentification. However, very few studies investigated the combination of transformer-based language models and rules. OBJECTIVE: The objective of this study is to develop a hybrid deidentification pipeline for Australian EHR text notes using rules and transformers. The study also aims to investigate the impact of pretrained word embedding and transformer-based language models. METHODS: In this study, we present a hybrid deidentification pipeline called OpenDeID, which is developed using an Australian multicenter EHR-based corpus called OpenDeID Corpus. The OpenDeID corpus consists of 2100 pathology reports with 38,414 SHI entities from 1833 patients. The OpenDeID pipeline incorporates a hybrid approach of associative rules, supervised deep learning, and pretrained language models. RESULTS: The OpenDeID achieved a best F1-score of 0.9659 by fine-tuning the Discharge Summary BioBERT model and incorporating various preprocessing and postprocessing rules. The OpenDeID pipeline has been deployed at a large tertiary teaching hospital and has processed over 8000 unstructured EHR text notes in real time. CONCLUSIONS: The OpenDeID pipeline is a hybrid deidentification pipeline to deidentify SHI entities in unstructured EHR text notes. The pipeline has been evaluated on a large multicenter corpus. External validation will be undertaken as part of our future work to evaluate the effectiveness of the OpenDeID pipeline.


Assuntos
Anonimização de Dados , Registros Eletrônicos de Saúde , Humanos , Austrália , Algoritmos , Hospitais de Ensino
9.
J Gen Intern Med ; 37(1): 32-39, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34379277

RESUMO

BACKGROUND: Shortening time between office visits for patients with uncontrolled hypertension represents a potential strategy for improving blood pressure (BP). OBJECTIVE: We evaluated the impact of multimodal strategies on time between visits and on improvement in systolic BP (SBP) among patients with uncontrolled hypertension. DESIGN: We used a stepped-wedge cluster randomized controlled trial with three wedges involving 12 federally qualified health centers with three study periods: pre-intervention, intervention, and post-intervention. PARTICIPANTS: Adult patients with diagnosed hypertension and two BPs ≥ 140/90 pre-randomization and at least one visit during post-randomization control period (N = 4277). INTERVENTION: The core intervention included three, clinician hypertension group-based trainings, monthly clinician feedback reports, and monthly meetings with practice champions to facilitate implementation. MAIN MEASURES: The main measures were change in time between visits when BP was not controlled and change in SBP. A secondary planned outcome was changed in BP control among all hypertension patients in the practices. KEY RESULTS: Median follow-up times were 34, 32, and 32 days and the mean SBPs were 142.0, 139.5, and 139.8 mmHg, respectively. In adjusted analyses, the intervention did not improve time to the next visit compared with control periods, HR = 1.01 (95% CI: 0.98, 1.04). SBP was reduced by 1.13 mmHg (95% CI: -2.10, -0.16), but was not maintained during follow-up. Hypertension control (< 140/90) in the practices improved by 5% during intervention (95% CI: 2.6%, 7.3%) and was sustained post-intervention 5.4% (95% CI: 2.6%, 8.2%). CONCLUSIONS: The intervention failed to shorten follow-up time for patients with uncontrolled BP and showed very small, statistically significant improvements in SBP that were not sustained. However, the intervention showed statistically and clinically relevant improvement in hypertension control suggesting that the intervention affected clinician decision-making regarding BP control apart from visit frequency. Future practice initiatives should consider hypertension control as a primary outcome. CLINICAL TRIAL: www.ClinicalTrials.gov Identifier: NCT02164331.


Assuntos
Anti-Hipertensivos , Hipertensão , Adulto , Anti-Hipertensivos/farmacologia , Anti-Hipertensivos/uso terapêutico , Pressão Sanguínea , Humanos , Hipertensão/tratamento farmacológico , Hipertensão/terapia
10.
J Med Internet Res ; 24(6): e37213, 2022 06 03.
Artigo em Inglês | MEDLINE | ID: mdl-35657661

RESUMO

BACKGROUND: Phenotype information in electronic health records (EHRs) is mainly recorded in unstructured free text, which cannot be directly used for clinical research. EHR-based deep-phenotyping methods can structure phenotype information in EHRs with high fidelity, making it the focus of medical informatics. However, developing a deep-phenotyping method for non-English EHRs (ie, Chinese EHRs) is challenging. Although numerous EHR resources exist in China, fine-grained annotation data that are suitable for developing deep-phenotyping methods are limited. It is challenging to develop a deep-phenotyping method for Chinese EHRs in such a low-resource scenario. OBJECTIVE: In this study, we aimed to develop a deep-phenotyping method with good generalization ability for Chinese EHRs based on limited fine-grained annotation data. METHODS: The core of the methodology was to identify linguistic patterns of phenotype descriptions in Chinese EHRs with a sequence motif discovery tool and perform deep phenotyping of Chinese EHRs by recognizing linguistic patterns in free text. Specifically, 1000 Chinese EHRs were manually annotated based on a fine-grained information model, PhenoSSU (Semantic Structured Unit of Phenotypes). The annotation data set was randomly divided into a training set (n=700, 70%) and a testing set (n=300, 30%). The process for mining linguistic patterns was divided into three steps. First, free text in the training set was encoded as single-letter sequences (P: phenotype, A: attribute). Second, a biological sequence analysis tool-MEME (Multiple Expectation Maximums for Motif Elicitation)-was used to identify motifs in the single-letter sequences. Finally, the identified motifs were reduced to a series of regular expressions representing linguistic patterns of PhenoSSU instances in Chinese EHRs. Based on the discovered linguistic patterns, we developed a deep-phenotyping method for Chinese EHRs, including a deep learning-based method for named entity recognition and a pattern recognition-based method for attribute prediction. RESULTS: In total, 51 sequence motifs with statistical significance were mined from 700 Chinese EHRs in the training set and were combined into six regular expressions. It was found that these six regular expressions could be learned from a mean of 134 (SD 9.7) annotated EHRs in the training set. The deep-phenotyping algorithm for Chinese EHRs could recognize PhenoSSU instances with an overall accuracy of 0.844 on the test set. For the subtask of entity recognition, the algorithm achieved an F1 score of 0.898 with the Bidirectional Encoder Representations from Transformers-bidirectional long short-term memory and conditional random field model; for the subtask of attribute prediction, the algorithm achieved a weighted accuracy of 0.940 with the linguistic pattern-based method. CONCLUSIONS: We developed a simple but effective strategy to perform deep phenotyping of Chinese EHRs with limited fine-grained annotation data. Our work will promote the second use of Chinese EHRs and give inspiration to other non-English-speaking countries.


Assuntos
Registros Eletrônicos de Saúde , Informática Médica , Algoritmos , Humanos , Fenótipo , Semântica
11.
J Biomed Inform ; 114: 103670, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33359548

RESUMO

With the extensive adoption of electronic health records (EHRs) by several healthcare organizations, more efforts are needed to manage and utilize such massive, various, and complex healthcare data. Databases' performance and suitability to health care tasks are dramatically affected by how their data storage model and query capabilities are well-adapted to the use case scenario. On the other hand, standardized healthcare data modeling is one of the most favorable paths for achieving semantic interoperability, facilitating patient data integration from different healthcare systems. This paper compares the state-of-the-art of the most crucial database management systems used for storing standardized EHRs data. It discusses different database models' appropriateness for meeting different EHRs functions with different database specifications and workload scenarios. Insights into relevant literature show how flexible NoSQL databases (document, column, and graph) effectively deal with standardized EHRs data's distinctive features, especially in the distributed healthcare system, leading to better EHR.


Assuntos
Sistemas de Gerenciamento de Base de Dados , Registros Eletrônicos de Saúde , Bases de Dados Factuais , Atenção à Saúde , Humanos , Armazenamento e Recuperação da Informação
12.
J Allergy Clin Immunol ; 145(2): 463-469, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31883846

RESUMO

The wide adoption of electronic health record systems in health care generates big real-world data that open new venues to conduct clinical research. As a large amount of valuable clinical information is locked in clinical narratives, natural language processing techniques as an artificial intelligence approach have been leveraged to extract information from clinical narratives in electronic health records. This capability of natural language processing potentially enables automated chart review for identifying patients with distinctive clinical characteristics in clinical care and reduces methodological heterogeneity in defining phenotype, obscuring biological heterogeneity in research concerning allergy, asthma, and immunology. This brief review discusses the current literature on the secondary use of electronic health record data for clinical research concerning allergy, asthma, and immunology and highlights the potential, challenges, and implications of natural language processing techniques.


Assuntos
Alergia e Imunologia , Registros Eletrônicos de Saúde , Processamento de Linguagem Natural , Projetos de Pesquisa , Humanos
13.
Genet Med ; 22(1): 102-111, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31383942

RESUMO

PURPOSE: "Genome-first" approaches, in which genetic sequencing is agnostically linked to associated phenotypes, can enhance our understanding of rare variants' contributions to disease. Loss-of-function variants in LMNA cause a range of rare diseases, including cardiomyopathy. METHODS: We leveraged exome sequencing from 11,451 unselected individuals in the Penn Medicine Biobank to associate rare variants in LMNA with diverse electronic health record (EHR)-derived phenotypes. We used Rare Exome Variant Ensemble Learner (REVEL) to annotate rare missense variants, clustered predicted deleterious and loss-of-function variants into a "gene burden" (N = 72 individuals), and performed a phenome-wide association study (PheWAS). Major findings were replicated in DiscovEHR. RESULTS: The LMNA gene burden was significantly associated with primary cardiomyopathy (p = 1.78E-11) and cardiac conduction disorders (p = 5.27E-07). Most patients had not been clinically diagnosed with LMNA cardiomyopathy. We also noted an association with chronic kidney disease (p = 1.13E-06). Regression analyses on echocardiography and serum labs revealed that LMNA variant carriers had dilated cardiomyopathy and primary renal disease. CONCLUSION: Pathogenic LMNA variants are an underdiagnosed cause of cardiomyopathy. We also find that LMNA loss of function may be a primary cause of renal disease. Finally, we show the value of aggregating rare, annotated variants into a gene burden and using PheWAS to identify novel ontologies for pleiotropic human genes.


Assuntos
Doença do Sistema de Condução Cardíaco/genética , Cardiomiopatias/genética , Sequenciamento do Exoma/métodos , Lamina Tipo A/genética , Mutação com Perda de Função , Insuficiência Renal Crônica/genética , Idoso , Comorbidade , Biologia Computacional/métodos , Registros Eletrônicos de Saúde , Feminino , Estudos de Associação Genética , Predisposição Genética para Doença , Humanos , Masculino , Pessoa de Meia-Idade , Mutação de Sentido Incorreto , Fenótipo
14.
J Biomed Inform ; 101: 103343, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31821887

RESUMO

A byproduct of the transition to electronic health records (EHRs) is the associated observational data that capture EHR users' granular interactions with the medical record. Often referred to as audit log data or event log data, these datasets capture and timestamp user activity while they are logged in to the EHR. These data - alone and in combination with other datasets - offer a new source of insights, which cannot be gleaned from claims data or clinical data, to support health services research and those studying healthcare processes and outcomes. In this commentary, we seek to promote broader awareness of EHR audit log data and to stimulate their use in many contexts. We do so by describing EHR audit log data and offering a framework for their potential uses in quality domains (as defined by the National Academy of Medicine). The framework is illustrated with select examples in the safety and efficiency domains, along with their accompanying methodologies, which serve as a proof of concept. This article also discusses insights and challenges from working with EHR audit log data. Ensuring that researchers are aware of such data, and the new opportunities they offer, is one way to assure that our healthcare system benefits from the digital revolution.


Assuntos
Registros Eletrônicos de Saúde , Pesquisa sobre Serviços de Saúde , Atenção à Saúde
15.
J Biomed Inform ; 99: 103310, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31622801

RESUMO

BACKGROUND: Standards-based clinical data normalization has become a key component of effective data integration and accurate phenotyping for secondary use of electronic healthcare records (EHR) data. HL7 Fast Healthcare Interoperability Resources (FHIR) is an emerging clinical data standard for exchanging electronic healthcare data and has been used in modeling and integrating both structured and unstructured EHR data for a variety of clinical research applications. The overall objective of this study is to develop and evaluate a FHIR-based EHR phenotyping framework for identification of patients with obesity and its multiple comorbidities from semi-structured discharge summaries leveraging a FHIR-based clinical data normalization pipeline (known as NLP2FHIR). METHODS: We implemented a multi-class and multi-label classification system based on the i2b2 Obesity Challenge task to evaluate the FHIR-based EHR phenotyping framework. Two core parts of the framework are: (a) the conversion of discharge summaries into corresponding FHIR resources - Composition, Condition, MedicationStatement, Procedure and FamilyMemberHistory using the NLP2FHIR pipeline, and (b) the implementation of four machine learning algorithms (logistic regression, support vector machine, decision tree, and random forest) to train classifiers to predict disease state of obesity and 15 comorbidities using features extracted from standard FHIR resources and terminology expansions. We used the macro- and micro-averaged precision (P), recall (R), and F1 score (F1) measures to evaluate the classifier performance. We validated the framework using a second obesity dataset extracted from the MIMIC-III database. RESULTS: Using the NLP2FHIR pipeline, 1237 clinical discharge summaries from the 2008 i2b2 obesity challenge dataset were represented as the instances of the FHIR Composition resource consisting of 5677 records with 16 unique section types. After the NLP processing and FHIR modeling, a set of 244,438 FHIR clinical resource instances were generated. As the results of the four machine learning classifiers, the random forest algorithm performed the best with F1-micro(0.9466)/F1-macro(0.7887) and F1-micro(0.9536)/F1-macro(0.6524) for intuitive classification (reflecting medical professionals' judgments) and textual classification (reflecting the judgments based on explicitly reported information of diseases), respectively. The MIMIC-III obesity dataset was successfully integrated for prediction with minimal configuration of the NLP2FHIR pipeline and machine learning models. CONCLUSIONS: The study demonstrated that the FHIR-based EHR phenotyping approach could effectively identify the state of obesity and multiple comorbidities using semi-structured discharge summaries. Our FHIR-based phenotyping approach is a first concrete step towards improving the data aspect of phenotyping portability across EHR systems and enhancing interpretability of the machine learning-based phenotyping algorithms.


Assuntos
Registros Eletrônicos de Saúde/classificação , Interoperabilidade da Informação em Saúde , Obesidade/epidemiologia , Alta do Paciente , Adulto , Algoritmos , Índice de Massa Corporal , Comorbidade , Feminino , Humanos , Aprendizado de Máquina , Masculino , Fenótipo , Software
16.
J Med Internet Res ; 21(12): e16368, 2019 12 11.
Artigo em Inglês | MEDLINE | ID: mdl-31825321

RESUMO

The slogan "Gimme My Damn Data" has become a hallmark of a patient movement whose goal is to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since there have been enormous changes in both the technology and sociology of medicine as well as in their synthesis. As the patient movement has made strides, it has been met with opposition and obstacles. It has also become clear that the availability of Open Access information is just as empowering (or disabling) as access to electronic medical records and device data. Knowledge truly is power, and to withhold knowledge is to disempower patients. This essay lays out many examples of how this shows up as we strive for the best future of care.


Assuntos
Registros Eletrônicos de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Acesso dos Pacientes aos Registros , Participação do Paciente , Telemedicina , Humanos , Estados Unidos
17.
J Med Syst ; 43(3): 64, 2019 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-30729329

RESUMO

The blockchain technology has reached a great boom in the health sector, due to its importance to overcome interoperability and security challenges of the EHR and EMR systems in eHealth. The main objective of this work is to show a review of the existing research works in the literature, referring to the new blockchain technology applied in ehealth and exposing the possible research lines and trends in which this technology can be focused. The search for blockchain studies in eHealth field was carried out in the following databases: IEEE Xplore, Google Scholar, Science Direct, PubMed, Web of Science and ResearchGate from 2010 to the present. Different search criteria were established such as: "Blockchain" AND ("eHealth" OR "EHR" OR "electronic health records" OR "medicine") selecting the papers considered of most interest. A total of 84 publications on blockchain in eHealth were found, of which 18 have been identified as relevant works, 5.56% correspond to the year 2016, 22.22% to 2017 and 72.22% to 2018. Many of the publications found show how this technology is being developed and applied in the health sector and the benefits it provides. The new blockchain technology applied in eHealth identifies new ways to share the distributed view of health data and promotes the advancement of precision medicine, improving health and preventing diseases.


Assuntos
Troca de Informação em Saúde/normas , Telemedicina , Segurança Computacional , Registros Eletrônicos de Saúde/organização & administração , Melhoria de Qualidade
18.
J Med Syst ; 42(8): 156, 2018 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-29987560

RESUMO

The healthcare data is an important asset and rich source of healthcare intellect. Medical databases, if created properly, will be large, complex, heterogeneous and time varying. The main challenge nowadays is to store and process this data efficiently so that it can benefit humans. Heterogeneity in the healthcare sector in the form of medical data is also considered to be one of the biggest challenges for researchers. Sometimes, this data is referred to as large-scale data or big data. Blockchain technology and the Cloud environment have proved their usability separately. Though these two technologies can be combined to enhance the exciting applications in healthcare industry. Blockchain is a highly secure and decentralized networking platform of multiple computers called nodes. It is changing the way medical information is being stored and shared. It makes the work easier, keeps an eye on the security and accuracy of the data and also reduces the cost of maintenance. A Blockchain-based platform is proposed that can be used for storing and managing electronic medical records in a Cloud environment.


Assuntos
Computação em Nuvem , Bases de Dados Factuais , Registros Eletrônicos de Saúde , Medicare , Atenção à Saúde , Humanos , Estados Unidos
19.
J Med Internet Res ; 18(4): e77, 2016 Apr 13.
Artigo em Inglês | MEDLINE | ID: mdl-27076485

RESUMO

BACKGROUND: Patient portals are being used to provide a clinical summary of the office visit or the after-visit summary (AVS) to patients. There has been relatively little research on the characteristics of patients who access the AVS through a patient portal and their beliefs about the AVS. OBJECTIVE: The aim was to (1) assess the characteristics of patients who are aware of and access the AVS through a patient portal and (2) apply the Theory of Planned Behavior (TPB) to predict behavioral intention of patients toward accessing the AVS provided through a patient portal. METHODS: We developed a survey capturing the components of TPB (beliefs, attitude, perceived norm, and perceived behavioral control). Over a 6-month period, patients with a patient portal account with an office visit in the previous week were identified using our organization's scheduling system. These patients were sent an email about the study and a link to the survey via their portal account. We applied univariate statistical analysis (Pearson chi-square and 1-way ANOVA) to assess differences among groups (aware/unaware of AVS and accessed/did not access AVS). We reported means and standard deviations to depict belief strengths and presented correlations between beliefs and attitude, perceived norm, and perceived behavioral control. We used hierarchical regression analysis to predict behavioral intention toward accessing the AVS through the patient portal. RESULTS: Of the 23,336 patients who were sent the survey, 5370 responded for a response rate of 23.01%. Overall, 76.52% (4109/5370) were aware that the AVS was available through the patient portal and 54.71% of those (2248/4109) accessed the AVS within 5 days of the office visit. Patients who accessed the AVS had a greater number of sessions with the portal (mean 119, SD 221.5) than those who did not access the AVS (mean 79.1, SD 123.3, P<.001); the difference was not significant for awareness of the AVS. The strongest behavioral beliefs with accessing the AVS were being able to track visits and tests (mean 2.53, SD 1.00) followed by having medical information more readily accessible (mean 2.48, SD 1.07). In all, 56.7% of the variance in intention to access the AVS through the portal was accounted for by attitude, perceived norm, and perceived behavioral control. CONCLUSIONS: Most users of a patient portal were aware that the AVS was accessible through the portal. Patients had stronger beliefs about accessing the AVS with the goal of timely and efficient access of information than with engaging in their health care. Interventions to improve patient access of the AVS can focus on providers promoting patient beliefs about the value of the AVS for tracking tests and visits, and timely and efficient access of information.


Assuntos
Registros Eletrônicos de Saúde , Intenção , Adulto , Idoso , Análise de Variância , Atitude Frente aos Computadores , Registros Eletrônicos de Saúde/estatística & dados numéricos , Correio Eletrônico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Visita a Consultório Médico , Análise de Regressão , Inquéritos e Questionários
20.
AJR Am J Roentgenol ; 203(5): 945-51, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25341131

RESUMO

OBJECTIVE: We describe best practices for effective imaging clinical decision support (CDS) derived from firsthand experience, extending the Ten Commandments for CDS published a decade ago. Our collective perspective is used to set expectations for providers, health systems, policy makers, payers, and health information technology developers. CONCLUSION: Highlighting unique attributes of effective imaging CDS will help radiologists to successfully lead and optimize the value of the substantial federal and local investments in health information technology in the United States.


Assuntos
Algoritmos , Sistemas de Apoio a Decisões Clínicas/normas , Diagnóstico por Imagem/normas , Sistemas de Comunicação no Hospital/normas , Melhoria de Qualidade/normas , Procedimentos Desnecessários , Prática Clínica Baseada em Evidências , Estados Unidos
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