Cancer survivorship has traditionally received little research attention although it is associated with a variety of long-term consequences and also many other comorbidities. There is an urgent need to increase research on this area, and the secondary use of healthcare data has the potential to provide valuable insights on survivors' health trajectories. However, cancer survivors' data is often stored in silos and collected inconsistently. In this study we present CASIDE, an interoperable data model for cancer survivorship information that aims to accelerate the secondary use of healthcare data and data sharing across institutions. It is designed to provide a holistic view of the cancer survivor, taking into account not just the clinical data but also the patient's own perspective, and is built upon the emerging Health Level Seven (HL7) Fast Healthcare Interoperability Resources (FHIR) standard. Advantages of adopting FHIR and challenges in information modelling using this standard are discussed. CASIDE is a generalizable approach that is already being used as a support tool for the development of downstream applications to support clinical decision making and can contribute to translational collaborative research on cancer survivorship.
Keywords: Cancer survivorship; Data standards; FHIR; Healthcare data interoperability; Secondary use.
Copyright © 2021 The Author(s). Published by Elsevier Inc. All rights reserved.