Development of a standards‐based phenotype model for gross motor function to support learning health systems in pediatric rehabilitation

Abstract

Introduction:Research and continuous quality improvement in pediatric rehabilitation settings require standardized data and a systematic approach to use these data. Methods:We systematically examined pediatric data concepts from a pediatric learning network to determine capacity for capturing gross motor function (GMF) for children with Cerebral Palsy (CP) as a demonstration for enabling infrastructure for research and quality improvement activities of an LHS. We used an iterative approach to construct phenotype models of GMF from standardized data element concepts based on case definitions from the Gross Motor Function Classification System (GMFCS). Data concepts were selected using a theory and expert-informed process and resulted in the construction of four phenotype models of GMF: an overall model and three classes corresponding to deviations in GMF for CP populations.Results: Sixty five data element concepts were identified for the overall GMF phenotype model. The 65 data elements correspond to 20 variables and logic statements that instantiate membership into one of three clinically meaningful classes of GMF.

The SHOnet learning health system: Infrastructure for continuous learning in pediatric rehabilitation

“…SHOnet elevates the value of discrete data for research and learning in pediatric rehabilitation. Many of these mapped discrete data elements in SHOnet may support classifiers of functional performance and rehabilitation outcomes integral to improving care delivery and learning 42 …”

“…Many of these mapped discrete data elements in SHOnet may support classifiers of functional performance and rehabilitation outcomes integral to improving care delivery and learning. 42 The EHR is an essential infrastructure for a functioning LHS. However, in our experience extracting data from EHRs, we noticed that EHRs are currently not conducive to efficient assessment of system-wide clinical performance, especially in rehabilitation settings.…”