Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions

Abstract

Plain English Summary Experience-Based Co-Design is a method for helping patients and clinicians work together to improve healthcare services. Studies of participant experiences in projects which use this method and how they perceive the co-designer role are rare. Our study explores how we—patients and clinicians—saw our role and participation as co-designers over time. Our findings are based on our written and verbal reflections of participating in a co-design project aimed at developing an information resource booklet and film for use in cancer care. We also analysed meeting records, email messages between participants and a reflective diary kept by the researcher who was coordinating the project. Our findings show that views of our roles and contributions as co-design participants changed over time. Patients tended to see themselves as ‘co-designers’ simply because they shared their experiences throughout the co-design process. In contrast, clinicians saw themselves as ‘co-designers’ because they were working together with patients and making decisions with them. Factors such as time demands, and the skill of the facilitator affected the commitment of participants to co-design activities. Most participants regard the ownership of the newly developed information resources as being shared. Overall, we viewed our participation in the co-design project as a positive experience with results that will benefit clinical practice.

Keywords

• Experience-based co-design
• Co-production
• Patient and public involvement
• Intervention development
• Co-design
• PPI