Abstract
Our objectives were to review and categorize the existing data sources that are important to pediatric critical care medicine (PCCM) investigators and the types of questions that have been or could be studied with each data source. We conducted a narrative review of the medical literature, categorized the data sources available to PCCM investigators, and created an online data source registry. We found that many data sources are available for research in PCCM. To date, PCCM investigators have most often relied on pediatric critical care registries and treatment- or disease-specific registries. The available data sources vary widely in the level of clinical detail and the types of questions they can reliably answer. Linkage of data sources can expand the types of questions that a data source can be used to study. Careful matching of the scientific question to the best available data source or linked data sources is necessary. In addition, rigorous application of the best available analysis techniques and reporting consistent with observational research standards will maximize the quality of research using existing data in PCCM.
Highlights
INTRODUCTION “Big data” is the nickname in computer science, business, and public policy for the application of sophisticated analytic techniques to large and rapidly growing databases [1,2,3]
Pediatric critical care medicine research differs from adult critical care research in that no dominant claims database analogous to Medicare exists; pediatric patients are usually reimbursed via a mixture of private payers and state-based Medicaid systems that are not uniformly reported
Efforts to improve the quality of studies using existing data have resulted in several reporting standards for observational research, including the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines [72]
Summary
INTRODUCTION “Big data” is the nickname in computer science, business, and public policy for the application of sophisticated analytic techniques to large and rapidly growing databases [1,2,3]. Each pediatric intensive care unit (PICU) cares for a small number of heterogeneous patients with relatively rare diseases Care has improved such that mortality is rare, but the risk of significant morbidity is high [7, 8]. Existing data in PICU research of effect require data from many centers [9] Despite these challenges, clinicians and researchers in pediatric critical care medicine (PCCM) have the potential to decrease a lifetime of disease burden for their patients. Multi-center existing data sources and linkage of multiple data sources may provide solutions to both challenges in PCCM research: the small sample size of any one patient type at each institution and the lack of a dominant claims database
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