CASIDE: A data model for interoperable cancer survivorship information based on FHIR

• Published in: Journal of biomedical informatics Vol. 124; p. 103953
• Main Authors: González-Castro, Lorena, Cal-González, Victoria M., Del Fiol, Guilherme, López-Nores, Martín
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-12-2021
• Subjects: Cancer Survivors; Cancer survivorship; Data standards; Delivery of Health Care; Electronic Health Records; FHIR; Health Level Seven; Healthcare data interoperability; Humans; Information Dissemination; Neoplasms; Secondary use; Data standards; FHIR; Healthcare data interoperability; Secondary use; Cancer survivorship
• ISSN: 1532-0464; 1532-0480
• DOI: 10.1016/j.jbi.2021.103953

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•There is a need to increase research in cancer survivorship.•Secondary use of clinical data can provide valuable insights in survivorship care.•CASIDE is a FHIR-based data model to represent cancer survivor information.•HL7 FHIR standard has features to support the development of data analytic tools.•CASIDE can be used to accelerate data sharing and collection in cancer survivorship.
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.