Purpose: The aim of this paper was to briefly describe how the experience-based co-design (EBCD) approach was used to identify and implement improvements in the experiences of breast and lung cancer patients before (1) comparing the issues identified as shaping patient experiences in the different tumour groups and (2) exploring participants' reflections on the value and key characteristics of this approach to improving patient experiences.
Methods: Fieldwork involved 36 filmed narrative patient interviews, 219 h of ethnographic observation, 63 staff interviews and a facilitated co-design change process involving patient and staff interviewees over a 12-month period. Four of the staff and five patients were interviewed about their views on the value of the approach and its key characteristics. The project setting was a large, inner-city cancer centre in England.
Results: Patients from both tumour groups generally identified similar issues (or 'touchpoints') that shaped their experience of care, although breast cancer patients identified a need for better information about side effects of treatment and end of treatment whereas lung cancer patients expressed a need for more information post-surgery. Although the issues were broadly similar, the particular improvement priorities patients and staff chose to work on together were tumour specific. Interviewees highlighted four characteristics of the EBCD approach as being key to its successful implementation: patient involvement, patient responsibility and empowerment, a sense of community, and a close connection between their experiences and the subsequent improvement priorities.
Conclusion: EBCD positions patients as active partners with staff in quality improvement. Breast and lung cancer patients identified similar touchpoints in their experiences, but these were translated into different improvement priorities for each tumour type. This is an important consideration when developing patient-centred cancer services across different tumour types.