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Patient Engagement in the Implementation of Electronic Patient-Reported Outcome Tools: The Experience of Two
A Caissie1, J Lane2, B Barber2
1Department of Radiation Oncology, Dalhousie University, Halifax, NS B3H 1V7, Canada.
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.
