Improving the experience of older people with colorectal and breast cancer in patient-centred cancer care pathways using experience-based co-design

Background: Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare. Objectives: Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group. Design: Experience-Based Co-Design. Setting and participants: Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways. Interventions: Co-design quality improvement teams. Main outcome measures: Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient-professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position. Conclusion: This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients. Patient or Public Contribution: Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.