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.