AIMS: To share the patient and community engagement experience of two Canadian early adopter sites that implemented electronic patient-reported outcomes collection in radiotherapy practice. MATERIALS AND METHODS: In the first institution, the McGill University Health Centre, a socio-technical stakeholder co-design approach was used to develop a patient portal application (Opal) with built-in ePRO collection capability. Patient and family members were engaged through patient co-leadership, focus groups, semi-structured interviews, a persistent feedback form in the resultant application, and user satisfaction surveys. In the second institution, the Nova Scotia Health (NSH) centres of Dalhousie University's Department of Radiation Oncology, an industry-provided patient engagement tool was deployed. Patient and community engagement in the deployment effort was purposive to promote digital inclusion and diverse representation. Engagement was operationalized via a community feedback session and involvement of patient representatives in oversight committees. RESULTS: The McGill experience highlighted 3 particular points of concern for patients when collecting ePROs: (1) Data flow should be two-way such that patients have access to their data from the hospital (lab results, clinical notes) as well as providing their data to the hospital (ePROs)
(2) If ePROs are collected, they should be used actively by clinicians or the incentive for patients to continue reporting will be diminished
(3) The inherent rigour of electronic data collection may risk frustrating patients due to the inability to skip questions or spoil responses. The Dalhousie/NSH experience demonstrated the value and importance of including a diverse set of community representatives in building an ePRO program so that it can proactively account for real-world complexities and the challenge of simultaneously addressing the needs of diverse communities. CONCLUSION: Two early-adopter Canadian cancer care programs reported on their experience and lessons learned with patient and community engagement in the rollout of their ePRO collection initiatives.