Use of an Integrated Knowledge Translation Approach to Develop an Electronic Patient-Reported Outcome System for Cancer Rehabilitation: Tutorial

Electronic prospective surveillance models (ePSMs) have the potential to improve the management of cancer-related impairments by systematically screening patients using electronic patient-reported outcomes during and after treatment, and linking them to tailored self-management resources and rehabilitation programs. However, their successful implementation into routine care requires careful consideration of patient and provider needs and must align with clinical workflows, which may vary across settings and require adaptation to the local context. The aim of this paper is to describe the development of REACH, a web-based ePSM designed to remotely screen for physical cancer-related impairments and direct patients to rehabilitation resources based on need. The development of REACH followed an integrated knowledge translation (iKT) approach, engaging key knowledge users including patients, clinicians, administrators, and information technology specialists. The development process involved collaboration across 5 working groups. The system content and logic group selected the impairments to be screened, measures used, frequency of screening, and resources recommended based on results of a survey with oncology providers and researchers, patient feedback, a literature review, and an environmental scan. The machine learning group explored predictive modeling approaches to optimize the assessment frequency using retrospective patient data. The implementation group identified features from existing systems that could be built to promote assessment completion and integration into clinical workflows through a scoping review, interviews with clinic staff, and focus groups with patients. The design group conducted co-design workshops and usability testing with patients to iteratively refine the interface and develop a prototype. Finally, the software development group converted the prototype to a web-based application and conducted privacy and security assessments and quality assurance. The integration of key knowledge users through an iKT approach played a critical role in determining the design and functionality of REACH. REACH allows patients to remotely complete assessments tailored to their cancer type and treatment status on any electronic device. The system generates automated advice based on the assessment responses, including links to educational resources for self-management, suggestions for community programs to register for, and recommendations to contact their oncology team for further assessment and possible referral to rehabilitation services. These recommended resources are stored in the patient's personalized library, organized by type and severity of cancer-related impairments reported, and are updated following each new electronic patient-reported outcomes assessment completed. Additional key system features include a patient-driven and structured process for managing high impairment scores, usability enhancements to improve navigation, and safeguards to ensure data security. The development of REACH demonstrates how an iKT approach can be used to design an ePSM that is user-friendly, clinically relevant, and aligned with implementation considerations. The system has been implemented at 4 Canadian cancer centers, and its implementation is being evaluated to inform future refinements.