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

Introduction: To describe the development and implementation of learning health system (LHS) infrastructure for a pediatric specialty care health system to support LHS research in pediatric rehabilitation settings. Methods: An existing pediatric common data model (eg, PEDSnet) of standardized medical terminologies for research was expanded and leveraged for this stud, and applied to SHOnet, a clinical research data resource consisting of deidentified data extracted from the electronic health record (EHR) from the Shriners Hospitals for Children speacialty pediatric health care system. We mapped EHR data for laboratory, procedures, drugs, and conditions to standardized vocabularies including ICD-10, CPT, RxNorm, and LOINC to the common data model using an established extraction-transformation-loading process. Rigorous quality checks were conducted to ensure a high degree of data conformance, completeness, and plausibility. SHOnet data elements from all sources are de-identified and the server is managed by the SHC Information Systems Department. SHOnet data are refreshed monthly and data elements are continually expanded based on new research endeavors. Interventions: Not applicable. Results: The Shriners Health Outcomes Network (SHOnet) includes data for over 10 000 distinct observational data elements based on over two million patient encounters between 2011 and present. Conclusion: The systematic process to develop SHOnet is replicable and flexible for other pediatric rehabilitation research settings interested in building out their LHS capabilities. Challenges and facilitators may arise for building such LHS infrastructure for rehabilitation in areas of (a) data capture, curation, query, and governance, (b) generating knowledge from data, and (c) dissemination and implementation of new institutional knowledge. Further research studies are needed to evaluate these data resources for scalable system-learning endeavors.SHOnet is an exemplar of an LHS for rehabilitation and specialty care settings. The success of an LHS is dependent on engagement of multiple stakeholders, shared governance, effective knowledge translation, and deep commitment to long-term strategies for engaging clinicians, administration, and families in leveraging knowledge to improve clinical outcomes.

Programmatic assessment of a university-based implant training program using patient-reported outcomes.

The University of Kentucky College of Dentistry (UKCD) established an implant training program that provides training in the use of a single implant system, evidence-based diagnostic and treatment protocols (standardized work practices), and a total quality management system (Implant Quality Assurance Program). The aim of this study was to assess the programmatic effectiveness of the UKCD implant training program by reporting the success and survival of implants placed, using patient-reported outcomes and comparing them to previously established benchmarks. A total of 415 patients (963 implants) were interviewed, approximately 50 percent of all qualified patients. The implant survival rate was 97 percent, and 88 percent of the implants were considered successful (as determined by patient-centric criteria). These outcomes were consistent with the program's previously established benchmarks of 90 percent. These results suggest that work standardization (in the form of specific treatment protocols) and the use of a formal, incremental learning system can result in positive patient outcomes. Clinical outcomes should be monitored in academic dental settings as part of clinical process improvement, and these outcomes can provide a means of assessing the effectiveness of the training program.

Recognition and management of autonomic dysreflexia in pediatric spinal cord injury.

BACKGROUND: Autonomic dysreflexia (AD) is a well-documented complication of spinal cord injury (SCI) at or above the T6 level. However, research into AD has focused primarily on the adult. Because research that involves children with SCI is scarce, current guidelines may not be appropriate for children. Therefore, many episodes of AD may be unrecognized or inappropriately treated. To address this issue, Shriners Hospitals for Children undertook the development of a protocol specific to children and adolescents. METHOD: A task force was developed to look at current literature on AD and blood pressure in children. Utilizing this literature and consensus among the task force members, the tools necessary to treat children with SCI at risk for AD were developed. RESULTS: The task force developed several products intended to assist in the recognition and management of AD. These include an event flow sheet for recording incidents of AD, a letter for the child's school or primary care physician that provides a brief summary of AD and the child's baseline blood pressure, and a policy/protocol with 2 age-specific algorithms to standardize interventions across the 3 Shriners Hospitals in the United States with SCI programs (California, Illinois, and Pennsylvania). CONCLUSION: The Shriners Hospitals for Children Task Force on Autonomic Dysreflexia in Children with Spinal Cord Injury has developed several tools specific to children. However, many questions remain to be answered concerning blood pressure norms and the clinical presentation of AD in children.