A critical function of public health is to monitor diseases that impede quality of life and burden affected communities. The Diabetes in Children, Adolescents and Young Adults (DiCAYA) Network aims to advance disease monitoring for diabetes using multi-site electronic health record (EHR) data.

This work involved validating and refining case definitions for accurate identification of type 1 and type 2 diabetes cases to estimate incidence and prevalence of diabetes in children, adolescents, and young adults through age 44 years.

In this essay, we describe the challenges experienced by the Network and lessons learned. Challenges included accessing EHR data, harmonizing EHR data from heterogeneous health systems to a common data model, and developing methods to account for bias introduced by the non-representativeness of health care utilization data. Lessons learned included approaches for data quality assessment, bias correction, and scalability.

As the US continues to evolve its public health data systems and its approach to chronic disease monitoring, the DiCAYA Network offers guidance on factors for success as well as pitfalls to avoid.

Type 1 and 2 diabetes

Children and adolescents and young adults

Electronic and medical health records

© 2026 The Authors. Published by Elsevier Inc.