Dataset Information

Creation of a Multicenter Pediatric Inpatient Data Repository Derived from Electronic Health Records.

ABSTRACT:

Background

Integration of electronic health records (EHRs) data across sites and access to that data remain limited.

Objective

We developed an EHR-based pediatric inpatient repository using nine U.S. centers from the National Institute of Child Health and Human Development Pediatric Trials Network.

Methods

A data model encompassing 147 mandatory and 99 optional elements was developed to provide an EHR data extract of all inpatient encounters from patients <17 years of age discharged between January 6, 2013 and June 30, 2017. Sites received instructions on extractions, transformation, testing, and transmission to the coordinating center.

Results

We generated 177 staging reports to process all nine sites' 147 mandatory and 99 optional data elements to the repository. Based on 520 prespecified criteria, all sites achieved 0% errors and <2% warnings. The repository includes 386,159 inpatient encounters from 264,709 children to support study design and conduct of future trials in children.

Conclusion

Our EHR-based data repository of pediatric inpatient encounters utilized a customized data model heavily influenced by the PCORnet format, site-based data mapping, a comprehensive set of data testing rules, and an iterative process of data submission. The common data model, site-based extraction, and technical expertise were key to our success. Data from this repository will be used in support of Pediatric Trials Network studies and the labeling of drugs and devices for children.

SUBMITTER: Hornik CP

PROVIDER: S-EPMC6506334 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Publications

Creation of a Multicenter Pediatric Inpatient Data Repository Derived from Electronic Health Records.

Hornik Christoph P CP Atz Andrew M AM Bendel Catherine C Chan Francis F Downes Kevin K Grundmeier Robert R Fogel Ben B Gipson Debbie D Laughon Matthew M Miller Michael M Smith Michael M Livingston Chad C Kluchar Cindy C Heath Anne A Jarrett Chanda C McKerlie Brian B Patel Hetalkumar H Hunter Christina C

Applied clinical informatics 20190301 2

<h4>Background</h4>Integration of electronic health records (EHRs) data across sites and access to that data remain limited.<h4>Objective</h4>We developed an EHR-based pediatric inpatient repository using nine U.S. centers from the National Institute of Child Health and Human Development Pediatric Trials Network.<h4>Methods</h4>A data model encompassing 147 mandatory and 99 optional elements was developed to provide an EHR data extract of all inpatient encounters from patients <17 years of age d ...[more]

PMID: 31067576

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Project description:BackgroundHypertension is the most prevalent risk factor for mortality globally. Uncontrolled hypertension is associated with excess morbidity and mortality, and nearly one-half of individuals with hypertension do not have the condition under control. Data from electronic health record (EHR) systems may be useful for community hypertension surveillance, filling a gap in local public health departments' community health assessments and supporting the public health data modernization initiatives currently underway. To identify patients with hypertension, computable phenotypes are required. These phenotypes leverage available data elements-such as vitals measurements and medications-to identify patients diagnosed with hypertension. However, there are multiple methodologies for creating a phenotype, and the identification of which method most accurately reflects real-world prevalence rates is needed to support data modernization initiatives.ObjectiveThis study sought to assess the comparability of 6 different EHR-based hypertension prevalence estimates with estimates from a national survey. Each of the prevalence estimates was created using a different computable phenotype. The overarching goal is to identify which phenotypes most closely align with nationally accepted estimations.MethodsUsing the 6 different EHR-based computable phenotypes, we calculated hypertension prevalence estimates for Marion County, Indiana, for the period from 2014 to 2015. We extracted hypertension rates from the Behavioral Risk Factor Surveillance System (BRFSS) for the same period. We used the two 1-sided t test (TOST) to test equivalence between BRFSS- and EHR-based prevalence estimates. The TOST was performed at the overall level as well as stratified by age, gender, and race.ResultsUsing both 80% and 90% CIs, the TOST analysis resulted in 2 computable phenotypes demonstrating rough equivalence to BRFSS estimates. Variation in performance was noted across phenotypes as well as demographics. TOST with 80% CIs demonstrated that the phenotypes had less variance compared to BRFSS estimates within subpopulations, particularly those related to racial categories. Overall, less variance occurred on phenotypes that included vitals measurements.ConclusionsThis study demonstrates that certain EHR-derived prevalence estimates may serve as rough substitutes for population-based survey estimates. These outcomes demonstrate the importance of critically assessing which data elements to include in EHR-based computer phenotypes. Using comprehensive data sources, containing complete clinical data as well as data representative of the population, are crucial to producing robust estimates of chronic disease. As public health departments look toward data modernization activities, the EHR may serve to assist in more timely, locally representative estimates for chronic disease prevalence.

Project description:The use of electronic health records has garnered interest as an approach for conducting innovative outcome research and producing real-world evidence at a reduced cost compared to traditional clinical trials. The study aimed to evaluate the utility of deidentified EHR data from a multicenter research network to identify characteristics associated with treatment escalation (TE) in newly diagnosed pediatric ulcerative colitis patients. EHR data (01/2010-12/2021) from 13 Midwest healthcare systems (Greater Plains Collaborative) were collected for pediatric ulcerative colitis patients. We identified standard treatments, excluded missing initial therapy data, and analyzed the TE and time-to-TE outcomes. The clinical and laboratory characteristics at baseline were extracted. Logistic and Cox models were used, and the missing risk factors were imputed. Machine-learning Bayesian additive regression trees were also utilized to create partial dependence plots for assessing the associations between risk factors and clinical outcomes. A total of 502 eligible pediatric patients (aged 4-17 years) who initiated standard treatment were identified. Among them, 205 out of 502 (41%) experienced TE, with a median (P25, P75) duration of 63 (9, 237) days after the initial treatment. Additionally, 20 out of 509 (4%) patients underwent colectomy (COL) with a median (P25, P75) duration of 80 (3, 205) days. Both multivariable logistic regression and Cox proportional hazards regression demonstrated moderate discriminative power in predicting TE and time-to-TE, respectively. Common positive predictors for both TE and time-to-TE included a high monocyte proportion and elevated platelet counts. Conversely, BMI z-score, albumin, hemoglobin levels, and lymphocyte proportion were negatively associated with both TE and time-to-TE. This study demonstrates that multicenter EHR data can be used to identify a trial-comparable study sample of potentially larger size and to identify clinically meaningful endpoints for conducting outcome analysis and generating real-world evidence.

Dataset Information

Creation of a Multicenter Pediatric Inpatient Data Repository Derived from Electronic Health Records.

Background

Objective

Methods

Results

Conclusion

Publications

Creation of a Multicenter Pediatric Inpatient Data Repository Derived from Electronic Health Records.

Similar Datasets

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