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

Abstract

Background Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came—over time—to perceive their role and involvement in co-designing a cancer care intervention. Methods The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher’s diary were deductively analysed using the initial themes generated from this inductive analysis. Results Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a ‘co-designer’, (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. Conclusion Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice.

A virtuous cycle of co‐production: Reflections from a community priority‐setting exercise

“…This requires defining the parameters and having a shared understanding of the co‐production process at the start of the project. In agreement with existing evidence, having a shared understanding of the co‐production process is one of the determinants of success in co‐produced projects 9 . This is reflected in our proposed virtuous cycle.…”

“…For instance, Oliver et al suggested a ‘cautious approach’ to co‐production to maximise its benefits over the costs 3 . A common principle that is inherent in co‐produced research is that of sharing 1,9 . The INVOLVE guidance published in 2018 highlight the sharing of power and responsibilities 2 .…”

“…Co‐production exercises often do not follow a definitive model, but some frameworks have been introduced to foster collaborative or participatory research, for example, Experience Based Co‐Design and Always Events®. Although these frameworks are pertinent to health service development and quality improvement, 6,29,30 existing studies recommend that it is crucial to adapt the co‐production process to the needs of the research and collaborators 9,31 . This requires defining the parameters and having a shared understanding of the co‐production process at the start of the project.…”

“…Although sharing power has been identified as a key principle of co‐production, a truly equal distribution of power in co‐production exercises is challenging as there is no clarity on how this can be achieved 4,31 . Power is also one of the drivers of tension and interpersonal conflicts among collaborators in co‐produced research 1,9,27 . Power differentials among collaborators can give rise to inequalities if not properly managed 2 .…”

“…In particular, there is little procedural guidance or identification of mechanisms that constitute effective co‐production and how this translates to quality outcomes in practice 3,4 . There are also several ways of working with stakeholders in research including patient and public involvement (PPI), patient partnership, co‐design, co‐creation and public engagement 3,8–10 . These different ways of working in research further complicate the understanding of co‐production and have resulted in it sometimes being used interchangeably to mean PPI, co‐creation or co‐design 8,9,11 .…”