Implementation of a learning healthcare system for sickle cell disease.

JAMIA Open
Robin MillerE Anders Kolb

Abstract

Using sickle cell disease (SCD) as a model, the objective of this study was to create a comprehensive learning healthcare system to support disease management and research. A multidisciplinary team developed a SCD clinical data dictionary to standardize bedside data entry and inform a scalable environment capable of converting complex electronic healthcare records (EHRs) into knowledge accessible in real time. Clinicians expert in SCD care developed a data dictionary to describe important SCD-associated health maintenance and adverse events. The SCD data dictionary was deployed in the EHR using EPIC SmartForms, an efficient bedside data entry tool. Additional data elements were extracted from the EHR database (Clarity) using Pentaho Data Integration and stored in a data analytics database (SQL). A custom application, the Sickle Cell Knowledgebase, was developed to improve data analysis and visualization. Utilization, accuracy, and completeness of data entry were assessed. The SCD Knowledgebase facilitates generation of patient-level and aggregate data visualization, driving the translation of data into knowledge that can impact care. A single patient can be selected to monitor health maintenance, comorbidities, adverse event fr...Continue Reading

References

Sep 10, 2014·JAMA : the Journal of the American Medical Association·Barbara P YawnJoylene John-Sowah
Aug 1, 2015·Journal of the American College of Cardiology·Thomas M Maddox, T Bruce Ferguson
Feb 6, 2017·Lancet·Russell E WareMiguel R Abboud
May 5, 2017·BMJ Quality Improvement Reports·Craig FrymanNirvani Goolsarran

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Citations

Nov 25, 2021·JAMA Network Open·Silvia P CanelónMary Regina Boland

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Software Mentioned

Bootstrap
SmartPhrase
RedHat Enterprise Linux
Pentaho Data Integration
Google Charts
SmartForms
DataTables
SmartForm
PostgreSQL
jQuery

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