Introduction: Patient surveys represent unique opportunities for patients to evaluate whether current cancer care responds to their needs and expectations, ideally with a strong patient and public involvement (PPI). In 2018, we launched the first cross-sectional survey of patient experiences with cancer care (SCAPE-1) in the French-speaking region of Switzerland. In 2021, we repeated and expanded the survey (SCAPE-2) to hospitals in the German-speaking region.
Methods: Over the course of SCAPE-1 and SCAPE-2, PPI was applied in all phases of the project. Patient Partners took part in the study steering committee. They participated in the translation, validation and pre-test of the questionnaire. They revised patient materials and answered patient email inquiries. They were included in the interpretation of the results. Finally, Patient Partners led the dissemination of the lay summary of results sent to participants.
Results: We had a 44% and 49% response rate to the SCAPE-1 and SCAPE-2 studies. Results were transmitted to patients and hospitals, which implemented changes in areas of care less well rated. So far, for SCAPE-1, the Patient Partner also communicated the results on social media and co-authored a scientific paper. More dissemination activities under the lead of Patient Partners are planned for SCAPE-2.
Conclusions: Patient involvement is highly valuable before, during, and after the study. We are now planning the next survey (SCAPE-CH) for 2023, including 20 hospitals in all regions of Switzerland, with a third Italian-speaking Patient Partner.