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The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes.

A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts.

Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became “experts by experience” through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes.

The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design.

Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement.

Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers.

Analysis of the role patients and carers in implementation and improvement.

Testicular cancer affects approximately 550 men in Australia each year. Early intervention, with the potential to reduce the burden of this serious disease, requires a strong understanding of the factors that influence help‐seeking. In the current qualitative retrospective study, the symptom‐recognition and help‐seeking experiences of 11 men aged between 28‐44 years who had undergone treatment for testicular cancer were examined. Analysis of the semistructured telephone interview data indicated that most men sought help early, and were treated promptly. A few men, however, described prolonged help‐seeking delays. The factors implicated in help‐seeking delays included lack of knowledge about testicular cancer; initial misattribution of symptoms; slowly progressing or low‐severity symptoms; a busy lifestyle; embarrassment about having a genital examination; and a fear of orchidectomy and its potential threat to masculinity. Further research using quantitative methodology is required to determine the relative importance of these various factors on help‐seeking delays.