title: A longitudinal analysis of data quality in a large pediatric data research network.
abstract: OBJECTIVE
  PEDSnet is a clinical data research network (CDRN) that aggregates electronic health record data from multiple children's hospitals to enable large-scale research. Assessing data quality to ensure suitability for conducting research is a key requirement in PEDSnet. This study presents a range of data quality issues identified over a period of 18 months and interprets them to evaluate the research capacity of PEDSnet.
  
  
  METHODS
  Results were generated by a semiautomated data quality assessment workflow. Two investigators reviewed programmatic data quality issues and conducted discussions with the data partners' extract-transform-load analysts to determine the cause for each issue.
  
  
  RESULTS
  The results include a longitudinal summary of 2182 data quality issues identified across 9 data submission cycles. The metadata from the most recent cycle includes annotations for 850 issues: most frequent types, including missing data (>300) and outliers (>100); most complex domains, including medications (>160) and lab measurements (>140); and primary causes, including source data characteristics (83%) and extract-transform-load errors (9%).
  
  
  CONCLUSIONS
  The longitudinal findings demonstrate the network's evolution from identifying difficulties with aligning the data to a common data model to learning norms in clinical pediatrics and determining research capability.
  
  
  CONCLUSIONS
  While data quality is recognized as a critical aspect in establishing and utilizing a CDRN, the findings from data quality assessments are largely unpublished. This paper presents a real-world account of studying and interpreting data quality findings in a pediatric CDRN, and the lessons learned could be used by other CDRNs.
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Children's Hospital of Philadelphia.
authors.forename: Ritu
authors.initials: R
authors.lastname: Khare
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Children's Hospital of Philadelphia.
authors.forename: Levon
authors.initials: L
authors.lastname: Utidjian
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Byron J
authors.initials: BJ
authors.lastname: Ruth
authors.affiliation: Department of Pediatrics, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA.
authors.forename: Michael G
authors.initials: MG
authors.lastname: Kahn
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Children's Hospital of Philadelphia.
authors.forename: Evanette
authors.initials: E
authors.lastname: Burrows
authors.affiliation: University of Cincinnati Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Keith
authors.initials: K
authors.lastname: Marsolo
authors.affiliation: Information Services Department, Children's Hospital Boston, Boston, MA, USA.
authors.forename: Nandan
authors.initials: N
authors.lastname: Patibandla
authors.affiliation: Department of Pediatrics, Children's Hospital of Philadelphia.
authors.forename: Hanieh
authors.initials: H
authors.lastname: Razzaghi
authors.affiliation: Department of Pediatrics, Washington University in St. Louis, St. Louis, MO, USA.
authors.forename: Ryan
authors.initials: R
authors.lastname: Colvin
authors.affiliation: Research Informatics, Seattle Children's Research Institute, Seattle, WA, USA.
authors.forename: Daksha
authors.initials: D
authors.lastname: Ranade
authors.affiliation: Research Information Solutions and Innovation, Nationwide Children's Hospital, Columbus, OH, USA.
authors.forename: Melody
authors.initials: M
authors.lastname: Kitzmiller
authors.affiliation: Center for Pediatric Auditory and Speech Sciences, Nemours Biomedical Research, Wilmington, DE, USA.
authors.forename: Daniel
authors.initials: D
authors.lastname: Eckrich
authors.affiliation: Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Department of Pediatrics, Children's Hospital of Philadelphia.|Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: L Charles
authors.initials: LC
authors.lastname: Bailey
mesh_terms: D035843:Biomedical Research; D000068598:Data Accuracy; D066264:Datasets as Topic / Q000592:standards*; D057286:Electronic Health Records / Q000592:standards*; D006776:Hospitals, Pediatric; D008137:Longitudinal Studies
keywords: CDRN; data quality; electronic health record; extract-transform-load; secondary use