This blogpost by Charikleia Sinani 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. The blogs follow a question-answer format.
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| Image by Pedro Vit | Unsplash |
What drew you to doing and researching co-production?
My journey into co-production was shaped by a deep frustration with how research often overlooks the voices of those it claims to serve—particularly children with cerebral palsy and individuals with Developmental Coordination Disorder (DCD) known as Dyspraxia. I saw how traditional approaches failed to capture the complexity of their lived experiences. Co-production offered a way to shift that dynamic. It aligned with my ethos: that research should be collaborative, inclusive, and driven by the people most affected. It wasn’t just a methodological choice—it was a moral one.
What was your first experience of co-productive research and what did you learn from it?
One of my earliest co-productive experiences was the development of a clinical trial, which focused on personalised group home-based exercise interventions for adolescents with cerebral palsy. At that time, my experience was based on what I had read and what others had told me; I knew little about co-production. We worked closely with young people and their families to shape everything—from the intervention design to the outcome measures. I learned that co-production demands more than consultation; it requires shared ownership. It taught me to listen differently, to slow down, and to embrace complexity rather than control it. I learned to “step back”.
What are the challenges of co-productive research, and how have you approached these?
Co-production is a powerful approach, but it comes with its challenges. Working with children who have neurodisabilities, or with neurodivergent individuals, requires navigating diverse communication needs, overcoming accessibility barriers, and engaging with institutional systems that are not always flexible. In several grant applications, we had to reconsider how we engage participants from underrepresented backgrounds—whether remotely or face-to-face—how we honour their time, and how we build trust across disciplines.
To address these challenges, I’ve embedded co-production from the outset: into funding bids, project timelines, and governance structures. It’s not an afterthought, but a foundational principle. I learned this through experience—by seeking advice, and by making mistakes.
For example, in one grant submission, we proposed co-producing an intervention for children with disabilities, delivered collaboratively by families, teachers, and clinicians. We formed a large and diverse consultation group that included families, children and adults with disabilities, headteachers, teachers, special needs coordinators, clinicians, NHS service managers, educational authorities, and representatives from the Research and Development Offices of each NHS service.
We quickly realised that it wasn’t feasible to hold meetings with everyone present at once, so we offered alternative meeting times that accommodated different schedules. While the group’s diversity presented logistical challenges, it also enabled us to identify solutions and anticipate issues related to cost and delivery. For instance, we accounted for translation and data costs to ensure the inclusion of underrepresented families from varied social and economic backgrounds—an insight we might have missed without such a broad and inclusive group.
What does co-productive research allow you to do that other methods don’t? Can you illustrate this with an example?
Co-production allows us to ask better questions—and get more meaningful answers. In the International Impact of DCD Adults Survey, individuals with lived experience helped us reframe the survey to reflect real-world concerns, like employment, finances, mental health, and identity, and most importantly, what mattered to them. That led to the development of a survey that resonated far beyond academia. Similarly, in the National Survey Evaluating the Impact of DCD in the UK, individuals with lived experience (parents and adults with DCD), professionals, and researchers working in the area shaped the recommendations themselves, ensuring they were practical, respectful, and rooted in lived experience. Traditional methods simply wouldn’t have captured that nuance. For example, I recall one individual with DCD telling us that we researchers tend to look at what individuals with DCD “cannot do” and not what they “can do”. This was eye-opening to me and all the researchers involved in the project.
What one writer or concept has been most influential on your approach to co-production?
I’ve been influenced by disability justice thinkers and participatory design scholars, but one concept that stands out is epistemic justice—the idea that everyone has the right to be a knower. It’s shaped how I approach co-production: not just as a way to gather data, but as a way to challenge whose knowledge counts. Whether it’s a child with cerebral palsy describing their therapy experience or an adult with DCD sharing their employment journey, their insights are not supplementary—they’re central.
Has being involved in co-production changed the ways you think about research? Or think about the world?
Completely. Co-production has made me more attuned to the relational and ethical dimensions of research. It’s shifted my focus from outcomes to processes—from what we produce to how we produce it. It’s also changed how I think about expertise, authority, and care. Research is no longer something I do to people—it’s something I build with them. That shift has transformed not just my work, but my worldview. It is time for us researchers to have a back seat and allow people with lived experience to steer our way.
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