Pathways to Real World Evidence From the Real World of School-Based Physical Fitness Testing (SB-PFT)

Unique challenges of data quality, standardization, and interoperability face non-traditional sources of real world data (RWD), those outside of the common RWD source, the electronic health record (EHR). The experience of our clinical, research, and community group in addressing the endangered school-based physical fitness testing (SB-PFT) data set may be useful as a paradigm for a variety of nontraditional instances of health-related RWD. Until recently, SB-PFT was mandated annually within public schools in ~60% of U.S. children and adolescents representing one of the most robust and inclusive data sets available in youth. When implemented rigorously, SB-PFT produced data that improved pediatric health and student learning. Driven by perceived and real gaps in data quality, inconsistent and insensitive school-site implementation, and uneven evidence for health-relevance, calls for revamping (and, in some cases, ending) school testing are growing.

To preserve and enhance this unique resource, SB-PFT must incorporate emerging science and technology. We describe here the rationale, structure, and process involved in our building an HL7-associated Domain Analysis Model for SB-PFT. Our team consisted of clinicians, exercise scientists, school personnel, publish health officials, parents and students. The structure of the DAM was facilitated by data standard experts and skilled Unified Modeling Language professionals. Administrative support was rendered by our institution's NIH-funded Clinical Translational Science Award.

The DAM will serve as a necessary first step in integrating Fast Healthcare Interoperability Resources (FHIR) and Learning Health Systems (LHS) models essential to realize the full potential of SB-PFT data in advancing child health.

The experience presented here can serve as a roadmap for addressing critical issues of data standardization and RWE generation in nontraditional instances of RWD. The DAM can be deployed in SB-PFT data exchange in real world settings.