Reflections on Coproduction and Experienced-Based Codesign in Healthcare Research
In recent years, the NHS has embraced coproduction and experience-based codesign (EBCD) as central approaches to service improvement, not simply as methods, but as a mindset. The idea of working with people rather than on them has gained momentum, particularly in research involving seldom-heard or underserved communities.
But these approaches are not effortless, nor are they uniformly positive. Throughout my research journey, using coproduction principles and creative design approaches to develop interventions with stroke survivors, I grappled with tensions, contradictions, ethics, and power dynamics. These reflections explore that journey: its complexities, its opportunities, and its value.
The Reality of Coproduction: Power, Tension and Shared Decision-Making
Coproduction is often celebrated in healthcare discourse, but the literature also exposes a more uncomfortable reality. Steen et al. (2018) warn of the “dark side” of coproduction, where power imbalances, interpersonal tension and decision-making conflicts can derail processes and damage relationships. Others echo this, pointing out that coproduction is rarely smooth (Dobe, Gustafsson and Walder, 2023). Stroke survivors, for example, have reported feeling unheard or overshadowed by professionals in healthcare codesign settings (Palmer et al., 2013).
On the other side of the debate, Williams et al. (2020) challenge the framing of coproduction as inherently risky or “evil.” They argue that Steen’s critique lacks depth, overlooks the context within which coproduction happens, and ignores the structural and academic limitations that may influence outcomes. Crucially, Williams and colleagues highlight the emancipatory and egalitarian values at coproduction’s core.
These contrasting perspectives reflect my own experience. At times, balancing the voices of stroke survivors and clinicians was difficult. Participants occasionally suggested ideas that were not feasible in clinical practice — but these moments became catalysts for dialogue and shared understanding.
As Chief Investigator, I carried both authority and responsibility. While I facilitated workshops through consensus-building and collaborative problem-solving, ultimately the ethical imperative was to acknowledge all contributions and make transparent decisions. Coulter et al. (2014) warn of the moral harm in asking for people’s lived experience only to disregard it — a principle that deeply shaped my approach. Even when consensus was not possible, every voice was valued, and decisions were openly explained.
In those moments, I learned that coproduction is not about eliminating disagreement — but navigating it with honesty and respect.
Design and Health: Learning from a Growing Field
The fields of design and health traditionally occupy separate worlds (Craig, Reay & Nakarada-Kordic, 2019). Yet, cross-sector collaboration is becoming increasingly recognised as a driver of innovation. Chamberlain and Craig (2017) observe the growing synergy between design-led thinking and healthcare improvement, a synergy I have been fortunate to experience first-hand.
I have worked alongside designers in projects focused on:
telemonitoring technologies
female urinals
flushing commodes
head and neck support systems for Motor Neurone Disease
rehabilitation for spinal injuries
hospital environmental enhancement
(See Reed et al., 2015; Wolstenholme et al., 2014; Bowen et al., 2013.)
These collaborations were formative. They taught me the value of creative and participatory methodologies and exposed me to the sensitivities involved when service users, designers and clinicians engage in shared decision-making.
Despite the growing evidence base, design-led codesign in NHS settings is still relatively new territory. The field is evolving, and with it comes a wealth of learning opportunities that continue to shape how we think about service improvement.
Creative Practice: A Foundation for Codesign
Funding restrictions meant I could not bring a designer formally into my fellowship research. However, I leaned on:
previous project experience
conversations with design colleagues
and immersion in design literature
to embed creative approaches into the study.
Langley et al. (2022) describe creative practice as:
“a marriage of divergent and convergent thinking and acting, where each half informs the other… using artistic and novel ways of inquiring; thinking, seeing, exploring, reflecting, questioning, communicating and documenting.”
This framing strongly influenced my approach. Creative methods opened non-threatening spaces where service users could:
share lived experience
express ideas visually
and contribute on equal terms with clinicians
Instead of forcing improvement through traditional consultation, ideas emerged through dialogue, visuals, prototyping and storytelling. The process was slower — and sometimes uncomfortable — but it allowed authentic coproduction to develop.
References
Bowen, S. et al. (2013) “How was it for you? Experiences of participatory design in the UK health service,” CoDesign, 9(4), pp. 230–246. Available at: https://doi.org/10.1080/15710882.2013.846384.
Chamberlain, P. and Craig, C. (2017) “HOSPITAbLe- critical design and the domestication of healthcare.,” in Proceedings of the 3rd Biennial Research Through Design Conference. Edinburgh, UK, pp. 114–130. Available at: https://doi.org/10.6084/m9.figshare.4746952.
Coulter, A. et al. (2014) “Collecting data on patient experience is not enough: they must be used to improve care,” BMJ, 348(mar27), pp. 1–4. Available at: https://doi.org/10.1136/bmj.g2225.
Craig, C.L., Reay, S. and Nakarada-Kordic, I. (2019) “Design/health: Exploring tensions in design and health for more effective trans-disciplinary collaborations,” Design Journal, 22(sup1), pp. 2215–2219. Available at: https://doi.org/10.1080/14606925.2019.1595014.
Dobe, J., Gustafsson, L. and Walder, K. (2023) “Co-creation and stroke rehabilitation: a scoping review,” Disability and Rehabilitation, 45(3), pp. 562–574. Available at: https://doi.org/10.1080/09638288.2022.2032411.
Harrison, M. and Palmer, R. (2015) “Exploring patient and public involvement in stroke research: a qualitative study,” Disability and Rehabilitation, 37(23), pp. 2174–2183. Available at: https://doi.org/10.3109/09638288.2014.1001525.
Langley, J. et al. (2022) “Exploring the value and role of creative practices in research co-production,” Evidence and Policy, 18(2), pp. 193–205. Available at: https://doi.org/10.1332/174426421X16478821515272.
Reed, H. et al. (2015) “Head-Up; An interdisciplinary, participatory and co-design process informing the development of a novel head and neck support for people living with progressive neck muscle weakness,” Journal of Medical Engineering & Technology, 39(7), pp. 404–410. Available at: https://doi.org/10.3109/03091902.2015.1088092.
Steen, T., Brandsen, T. and Verschuere, B. (2018) “The dark side of co-creation and co-production: Seven evils,” in B.V. Taco Brandsen, Trui Steen (ed.) Co-Production and Co-Creation: Engaging Citizens in Public Services. New York: Routledge, pp. 284–293. Available at: https://doi.org/10.4324/9781315204956.
Williams, O. et al. (2020) “Lost in the shadows: reflections on the dark side of co-production,” Health Research Policy and Systems, 18(1), pp. 1–10. Available at: https://doi.org/10.1186/s12961-020-00558-0.
Wolstenholme, D. et al. (2014) “Improving self-efficacy in spinal cord injury patients through ‘design thinking’ rehabilitation workshops,” BMJ Quality Improvement Reports, 3(1), p. u205728.w2340. Available at: https://doi.org/10.1136/bmjquality.u205728.w2340.
