An efficient approach for surveillance of childhood diabetes by type derived from electronic health record data: the SEARCH for Diabetes in Youth Study

J Am Med Inform Assoc. 2016 Nov;23(6):1060-1067. doi: 10.1093/jamia/ocv207. Epub 2016 Apr 23.


Objective: To develop an efficient surveillance approach for childhood diabetes by type across 2 large US health care systems, using phenotyping algorithms derived from electronic health record (EHR) data.

Materials and methods: Presumptive diabetes cases <20 years of age from 2 large independent health care systems were identified as those having ≥1 of the 5 indicators in the past 3.5 years, including elevated HbA1c, elevated blood glucose, diabetes-related billing codes, patient problem list, and outpatient anti-diabetic medications. EHRs of all the presumptive cases were manually reviewed, and true diabetes status and diabetes type were determined. Algorithms for identifying diabetes cases overall and classifying diabetes type were either prespecified or derived from classification and regression tree analysis. Surveillance approach was developed based on the best algorithms identified.

Results: We developed a stepwise surveillance approach using billing code-based prespecified algorithms and targeted manual EHR review, which efficiently and accurately ascertained and classified diabetes cases by type, in both health care systems. The sensitivity and positive predictive values in both systems were approximately ≥90% for ascertaining diabetes cases overall and classifying cases with type 1 or type 2 diabetes. About 80% of the cases with "other" type were also correctly classified. This stepwise surveillance approach resulted in a >70% reduction in the number of cases requiring manual validation compared to traditional surveillance methods.

Conclusion: EHR data may be used to establish an efficient approach for large-scale surveillance for childhood diabetes by type, although some manual effort is still needed.

Keywords: ascertainment and classification; automated algorithm; childhood diabetes; electronic health records; surveillance.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Algorithms*
  • Child
  • Child, Preschool
  • Clinical Coding
  • Diabetes Mellitus, Type 1* / classification
  • Diabetes Mellitus, Type 2* / classification
  • Electronic Health Records*
  • Female
  • Humans
  • Infant
  • Male
  • Population Surveillance / methods*
  • Sensitivity and Specificity
  • Young Adult