Co-designing a Personalised Care Plan for patients with rectal cancer: reflections and practical learnings

Abstract

Abstract Background: Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role—and how these may (or may not) change during a co-design project—is limited. The purpose of this paper was to synthesise the reflective accounts of cancer consumers, project staff, and a researcher who partnered on a project to develop a personalised care plan template, with the aim of generating guidance for others looking to partner with consumers in health and medical research. Here, our team of researchers, project staff, and consumers reflect on the experience of working together using Gibbs’ Reflective Cycle, which was completed by team members with responses then undergoing inductive data analysis. Results: Reflections are categorised under three core themes: (1) setting up the group and building relationships (2) measuring the value of consumer involvement, and (3) potential challenges for consumer involvement. Through reflection on our experiences of co-design, our team developed and identified practical strategies that contributed to the success of our partnership. These include setting expectations as a group; having experienced consumers on the team; having regular, pre-scheduled meetings that run to time; and working to overcome challenges identified by the group such as power imbalances, time commitment, and lack of diversity. Conclusion: These practical reflections on creating a safe and supportive environment in which genuine consumer involvement can take place could inform other institutions and researchers looking to work meaningfully with consumers in research.