Implementation of a learning healthcare system for Sickle Cell disease: List of smart data elements contained in the Epic Smartform and their SmartData types

Objective: 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 (EHR) into knowledge accessible in real-time. Materials
and Methods: 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 (PDI) 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. Results: 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 frequency and
severity, and medication dosing/adherence. Discussion: Disease-specific
data dictionaries used at the bedside will ultimately increase the
meaningful use of EHR datasets to drive consistent clinical data entry,
improve data accuracy and support analytics that will facilitate quality
improvement and research