Available online 1 May 2023, 151430

Author links open overlay panelAbstractObjectives

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.

Section snippetsThe Challenge of Big Data in Oncology

There is a vast amount of data in oncology, due to the surge of electronic health records (EHRs), patient registries, genomic databases, clinical research, and national audit.1 Such rich data have led to advances in oncology including new diagnostic and treatment options, service developments, and more personalized patient pathways.

Real-world data, namely health data that are routinely collected in real-world settings, have made a surge out of the need to monitor patient-reported outcome and

EHRs and Patient Portals

The purpose of integrating EHRs and patient-facing portals is for patients to have access to their data for self-management and monitoring of their own health. In addition, data can become readily available for clinicians to make the right clinical decisions at the right time, evaluate decision making in terms of what works for which people and under what circumstances, and, ultimately, enable population health management. The vision that EHRs will reduce health inequalities by democratizing

Patient and Public Involvement on EHR and Patient Portal Design

Cancer patient involvement in the design of patient-facing portals is extremely important to ensure maximum patient engagement with portals.17 Equally, clinical stakeholder involvement is critical if cancer specialists are to monitor those patients through the portals, encourage patient engagement, respond to symptoms and quality of life questionnaires, as well as analyze data for quality improvement.

Cancer patient involvement can take the form of focus groups, workshops, qualitative and

Conclusion and Recommendations

The growth of EHRs 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 personalized care models. The goals of EHRs and patient portals should be the systematic collection of real-world data and the translation of such evidence into clinical practice with the sole purpose of improving patient care and clinical outcomes. Real-world data collected through

Declaration of Competing Interests

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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