Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations
‘Codesign’ and associated terms such as ‘coproduction’ or ‘patient engagement’, are increasingly common in the health research literature, due to an increased emphasis on the importance of ensuring that research related to service/systems development is meaningful to end-users. However, there continues to be a lack of clarity regarding the key principles and practices of codesign, and wide variation in the extent to which service users are meaningfully engaged in the process. These issues are particularly acute when end-users include populations who have significant health and healthcare disparities that are linked to a range of intersecting vulnerabilities (eg, poverty, language barriers, age, disability, minority status, stigmatised conditions). The purpose of this paper is to prompt critical reflection on the nature of codesign research with vulnerable populations, including key issues to consider in the initial planning phases, the implementation process, and final outputs. Risks and tensions will be identified in each phase of the process, followed by a tool to foster reflexivity in codesign processes to address these issues.
Codesign facilitators need to embrace critical, reflexive practice, including development of a subjective, embodied understanding of their own standpoints and epistemological frameworks that will impact their relationships with others.
They need to be capable of improvising and taking other perspectives, and be willing to be transformed in the process.
These capabilities are cultivated through enhancing mindful awareness of, and working with the thoughts, emotions, perceptions, sensations, that arise as part of being in an interpersonal relationship.
The humanity and multidimensionality of all participants must be respected and attended to with care, compassion, creativity and humility. Relationships require openness and vulnerability in the immediacy of human-to-human connection.
There may be a clash of values since many organisations operate within a sociopolitical environment that privileges individualism over collectivism, self-sufficiency over collaboration, and scientific expertise over other ways of knowing based on lived experiences.
Codesign has been described as both a philosophy and a method27 that includes authentic and equitable collaboration between stakeholders in projects that are emergent, flexible and iterative.
Super users are individuals who frequently contribute to research projects. They are often invited to participate since they are actively engaged, articulate and clearly understand their role in the process. One of the dangers, however, is that over time, socialisation to their research role may desensitise them to the perspective of those experiencing greater disenfranchisement.
Principles and tools for engagement could include: (1) formalising agreements for shared leadership, decision making and ownership of knowledge; (2) providing training and ongoing mentorship for new participants who may be uncomfortable and/or unfamiliar with the process; (3) ensuring flexibility to account for differences and fluctuations in ability to participate; and (4) establishing formal recognition for the value of service user input.
Specific steps of codesign may vary depending on the project, however, core processes include building trust, finding voice, sharing perspectives and creating a common vision for change.
a range of probes, generative toolkits and prototyping strategies can facilitate the codesign process, using creative tools such as video, storyboards, clay and even Lego to evoke insights and ideas that transcend what people might put into words.
Ultimately, the process should continue to implementation and evaluation of the proposed solutions, with a commitment to ongoing collaboration in the process of change.
while practical solutions are important, the skills gained by service users, family/caregivers and staff in negotiating new ways of advancing the future that they have helped to shape is even more significant. This can be particularly important for groups who have a history of fractured relations (eg, mental health service users), wherein new shared identities can be developed as the basis for a restructuring of future relationships.
The ubiquity of codesign as a strategy for health service and system reform, and the diversity in how it is defined, begs the question of whether there should be standards for implementation and evaluation, as well as critical reflection on the implications of doing this work with participants who experience a range of vulnerabilities.
research should be theoretically informed, and build on implementation science principles that capture the context and complexity of the codesign process. Realist evaluation, therefore, is a promising approach, since it considers the impact of the context, as well as the mechanisms of change that shape project outcomes
Codesign is a philosophy and method that has the potential to empower people, both researchers and participants, service providers and service users, policy makers and community members. It must be recognised, however, that codesign is ultimately a relational process and as such, careful attention must be paid to ensuring that the process does not perpetuate inequities. The realities of fiscal and time constraints must be balanced with critical reflexivity and commitment to creating meaningful collaborative solutions.