This blogpost by Sara Ma is part of the ISJ series on co-production (autumn-winter 2025). Different post-graduate researchers and academics affiliated to the ISJ share their thoughts about doing co-production as part of their research.
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| Image: Sina Saadatmand | Unsplash |
In nursing, we say patients are at the centre of care—but their voices still remain at the margins of service and research design. In theory, involving those who use services or participate in research to shape design and delivery makes perfect sense. In practice, meaningful involvement is rarely straightforward: it requires time, trust, and resources, which are often scarce in overstretched systems.
When I first stepped into clinical research as a research nurse in 2013, I realised the same applied for clinical studies. Study designs were focused around upholding scientific rigour, but the procedures and protocols that protected this rigour often left little room for flexibility to account for patients needs or what really mattered to them.
The illusion of knowing
One study in particular really made me reflect. It involved asking patients awaiting high-risk surgery to attend hospital three times a week for supervised exercise sessions before their operation. I thought study recruitment would be difficult. Why would people facing major surgery add such a demanding schedule into their already overwhelming treatment journey? I was wrong, the study recruited to target. When I asked participants why they wanted to take part, they told me the sessions gave them stability and partnership at a time when life felt uncertain.
Of course, the study was not without its flaws. Parking was difficult, session times were limited, and facilities were basic. These were issues that could have been avoided with more collaborative planning. Drawn from previous experiences that may not have applied in this context, I felt into an illusion of knowledge, making assumptions about the patients that did not apply This experience was a valuable reminder of the need to continuously question my own assumptions.
Discovering co-production
As a nurse, I have always believed in the importance of hearing the patient voice. This belief came into sharper focus when I became an Inflammatory Bowel Disease (IBD) nurse in 2018. As a disease of the gastrointestinal tract, IBD is often hidden due to the taboos that surround the disease symptoms. When I joined the IBD nursing service at York Teaching Hospital, NHS Foundation Trust there was a patient panel who actively shaped the way in which the service was delivered. This was my first experience of ‘co-production’ in the sense that I now understand it in research.
Prior to that, I had witnessed public involvement work within the clinical trials I had worked on, but this was often top-down and more consultative in nature, with limited scope for people with lived experiences to shape the study design. This shift from consultation to collaboration was pivotal for me and captures the essence of co-production which brings together those with lived-experience, professionals, and researchers as equal partners.
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| Image by Sara Ma |
The challenges
When the COVID-19 pandemic hit, the IBD patient panel collapsed. Unfortunately, over 5 years later is still not back up and running. It is not for lack of will, desire or interest and it is something that weighs heavily on my mind (and that of my colleagues). This failure highlights the real-world difficulties faced when adopting co-production. Genuine collaboration takes time. It involves time, finding shared language, and often moving at a slower pace than clinical and research systems usually allow. True co-production means making difficult decisions when consensus cannot be reached. It requires conscious effort and for professionals to let go of control.
In my experience all of these can be overcome with the right education and support so what remains most challenging is creating the correct environment for enabling good co-production. It is easy to first assume the systems will be in place to compensate patient partners, book accessible rooms, co-ordinate diaries to find suitable times and places for everyone – in practice it is often the most difficult barrier to get past. Even digital technologies that can enable some flexibility in terms of location and time do not always offer a solution – sometimes people just need to be in the room together.
Implementing co-production in my own work
While I struggle to re-ignite the patient group in my clinical practice, I have been able to embed it meaningfully into my ongoing research. This is because, unlike clinical services, research funders have moved to ring-fence funding for co-production activities. Additionally, there has been greater acceptance of the qualitative methods used in co-production as a research methodology in their own right within the clinical research, which historically favoured positivist approaches.
My work has been heavily influenced by Paul Galdas, Professor of Men’s Health at the University of York. I was privileged to have Paul as my PhD supervisor, and lucky enough to be able to continue working alongside him and receive his mentorship. Paul, alongside two other very notable researchers in men’s health, Zan Seidler and John Oliffe, developed the 5C framework for designing men’s health programmes; as the first ‘C’, co-production provides the foundation for the approach which includes cost, context, content, communication.
While this framework is specifically designed for gender-transformative approaches to health programmes it is also applicable to research practice. Paul is an advocate for ensuring research is grounded in real lives and public involvement moves beyond tokenistic consultation to become embedded as routine practice in both health research and service delivery.
His work has inspired me to keep challenging the systems that make co-production difficult and to continue learning from patients who are the real experts in their own lives. We have recently published our research protocol that involves co-production methods. This work involves male sexual health in IBD, but the approach could be applicable to a wide domain of healthcare issues.
Looking Ahead
Co-production is not simple. It will never be the fastest or easiest option, and it can often feel uncomfortable, especially when opinions differ. Yet if our goal is to create healthcare and research that are meaningful to patients and families, co-production is not optional: it is essential.
In my current role as a lecturer, my teaching is shaped by a pedagogy that places students at the centre of their own learning. Letting students take the lead in their learning is not always easily and I think most educators would agree it is natural to feel that you must take control of the learning process. But when you create a system that allows students to take ownership, the experience becomes more valuable and meaningful for them, which echoes my experience of co-production in clinical research and practice.
I try to embed this ethos of patients as co-creators into my education strategies in the hope that it might help create a culture where listening differently is the norm rather than the exception. Patients are, after all, the experts in their own lives. The role of researchers (and nurses) is then to listen, to learn, and to ensure their voices inform the future of healthcare.
If you’d like to read more:
Ma, S., Forshaw, G., Kanaan, M, Knapp, P., Robinson, W., Selinger, C. and Galdas, P. 2025. Developing an Intervention to Improve Sexual Health Assessment and Care in Men With Inflammatory Bowel Disease. Journal of Advanced Nursing, 0: 1-13. https://doi.org/10.1111/jan.70199
Galdas, P. M., Seidler, Z. E. and Oliffe, J. L. 2023. Designing Men’s Health Programs: The 5C Framework. American Journal of Men’s Health.17(4). DOI: 10.1177/15579883231186463
