Getting ready for real‐world use of electronic patient‐reported outcomes (ePROs) for patients with cancer: A National Comprehensive Cancer Network ePRO Workgroup paper

Abstract

electronic health record (EHR), electronic patient-reported outcome (ePRO), patient health portal, patient-reported outcomes (PROs)The use of electronic patient-reported outcomes (ePROs) has increased dramatically in recent years across health care systems and specialties, including oncology. Therefore, an ePRO Workgroup was formed under the auspices of the National Comprehensive Cancer Network (NCCN) Electronic Health Record (EHR) Oncology Advisory Group (the Workgroup) aimed at clarifying the scope and potential value of ePROs with respect to clinical practice for the general oncology audience. The Workgroup members represent physician informaticists at leading academic centers involved with developing and implementing ePRO programs for people with cancer. The members are also practicing clinicians who will have to consider ePRO data in the context of caring for patients. With this unique dual perspective, the Workgroup explored several questions regarding ePRO definition, potential value, and roll-out readiness. The Workgroup arrived at an iterative process for successful ePRO programs consisting of 10 guiding principles. We believe these guiding principles can serve as a starting point for health care systems entering this exciting but daunting time of ePRO integration in the real-world care of people with cancer. We recognize that our guiding principles will find ePRO programs at varying states of maturity.These principles can serve cancer centers that might be contemplating ePRO implementation for the first time as well as centers that have already embarked on collection but are seeking to refine their approach. Therefore, these principles can and should be approached in iterative stages across the ePRO program lifecycle. Finally, these guiding principles also serve to inform payors, EHR vendors, and other stakeholders who are making decisions that ultimately influence ePRO program inception and development.

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“…This is especially important during periods of high pressure on cancer care accessibility, such as the COVID-19 pandemic, and in the upcoming years with the expected growing number of cancer survivors compared to the number of healthcare providers. The use of electronic Patient Reported Outcome Measures (ePROMs) will ensure a comprehensive understanding of patients’ well-being [ 29 ]. On the platform, patients will be able to receive immediate feedback and contextual information regarding their ePROMs (over time, and in comparison to peers), laboratory results, and medical imaging reports.…”

“…Some of the potential constraints of the platform are related to patient, clinical, and resource workflows. The impact on the workload of caregivers due to automatic referrals for patients experiencing deterioration, information overload for patients, and efficient workflows should be assessed before large implementation [ 29 , 31 ].

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“…Despite these benefits, the adoption of ePROs remains limited essentially due to the faced workflow and technologic challenges. In response to this, the National Comprehensive Cancer Network Electronic Health Record and Oncology Advisory Group explored roll‐out readiness and provided 10 guiding principles that support healthcare organisations in designing data collection workflows, minimising the burden and maximising the action, mitigating disparities, monitoring and measuring outcomes and ensuring continuous engagements (Cracchiolo et al, 2023 ).…”