The Development of a Dynamic Electronic Health Records Database for Childhood Cancer Survivors at a Single Institution: 30 Years of Data for Clinical and Research Applications

Background/Purpose: A customized Electronic Health Record (EHR)-embedded database for a childhood cancer survivorship program has the potential to capture detailed patient, treatment, and late effects information to facilitate both clinical and research applications. Methods: Epic EHR SmartForm fields were utilized to create and incorporate data points identified by stakeholders at a single institution. Along with demographic and clinical variables already captured through the EHR, additional data fields include cancer diagnosis, cancer stage/risk group, treatment information, and organ system-based late effects. Patients with central nervous system (CNS) malignancies were not included due to institutional follow-up structure. Results: Clinical applications of the clinical database include: (1) promoting timely follow-up care, (2) identifying patients eligible for multi-disciplinary comprehensive visits (e.g., Cardio-Oncology Clinic), (3) facilitating the transition to adult providers, and (4) building auto-populated cancer treatment summaries available to patients via the patient-facing portal (MyChart) and other providers (CareEverywhere). Research applications include: (1) identifying and screening patients for consortium and investigator-initiated studies and (2) providing resources for retrospective research studies. Conclusions: An Epic EHR-embedded database is both a feasible and effective repository of clinical information that can be used for survivorship care management, personalized cancer treatment summaries, and a robust resource for research.