Introduction: Experience-based co-design (EBCD) aims to reform healthcare service delivery through improving the experience of consumers and users of the service. Accurately representing their perspectives ensures improvements that they value most are prioritised for codesign. Based on a state-of-the-art literature review, this presentation demonstrates that the essence of EBCD – the experiences and perspectives of consumers and users – may be diminished by methodological choices. This presentation aims to stimulate conceptual and practical discussion about collecting and representing experience in EBCD. It will also identify implications for co-design in cancer research and practice.
Methods: A comprehensive systematic electronic search of four databases was conducted from inception to December 2022. Data were extracted using a structured data extraction tool. Thematic synthesis was undertaken to identify the scope and nature of the literature, justification for using EBCD methodology, collection, and representation of experience in practice, and methodological conclusions including facilitators and challenges.
Results: We found great diversity in the application of the philosophical concepts, use of terminology and reporting of methods. Touchpoints, a core feature of EBCD, are not always identified. Some studies do not identify the type of analysis used, while others hold divergent views regarding the appropriate type of analysis but provide no justification. A lack of methodological guidance, the extent of resources required to elicit consumer experience, and conducting EBCD with vulnerable populations including cancer patients, were highlighted as particular constraints by authors.
Conclusion: EBCD is distinct from other codesign methodology in that the lived experience of consumers and users is privileged and emphasised. This presentation will provide guidance for cancer research and practice assuring quality and safety in representing lived experience.