Big Data in Oncology: The Electronic Patient Record Transformation Program

Abstract

Objectives: There is a vast amount of real-world data collected daily in oncology through diagnostic, therapeutic, and patient-reported outcome measures. The challenge arises with linking data together to create structured and meaningful databases, which are representative of the general population, free of bias, and of good quality to be able to draw meaningful conclusions. Real-world data that are linked together within trusted cancer research environments could represent the next generation of big data strategy in cancer.

Data sources: Patient and public involvement initiatives and expert opinion.

Conclusion: Collaboration among specialist cancer data analysts, academic researchers, and clinicians within cancer institutions is key to standardizing the design and evaluation of real-world databases. Digital transformation efforts must include implementation of integrated care records and patient-facing portals, in combination with training and education of clinicians in digital skills and health leadership. As part of the Electronic Patient Record Transformation Program, our experience with patient and public involvement in the development of a cancer patient-facing portal linked to an oncology electronic health record at University Hospitals Coventry and Warwickshire has given us useful insights into patient needs and priorities.

Implications for nursing practice: The growth of electronic health records and patient portals is an opportunity to gather big data in oncology at a population level to help clinicians and researchers with the development of predictive and preventive algorithms and new models for personalized care.

Keywords: Big data; Oncology; Patient-reported outcomes; Personalized care.