Published: 06 July 2021
Sandra Jayacodi is a public contributor and Chair of the NIHR Imperial Biomedical Research Centre Public Advisory Panel. To mark Co-production Week she discusses her experiences of being a service user on an award-winning co-produced research project.
As someone who has previously experienced mental health problems, taking part in a co-produced research project on the relationship between mental and physical ill-health was a transformative experience. For two years I and others contributed our lived experience to an award-winning project.
Co-production means involving people who can benefit from research in shaping it from the very outset, as equal partners. It leads to higher quality, more impactful research, better focused on the needs of those it should ultimately benefit. The research I took part in reflected these principles, so it’s worth looking back on what that project got right.
What co-production done well looks like
I was one of three service users co-producing the SHINE project. The project aimed to improve the physical healthcare assessment offered to people admitted to the mental health wards at St Charles Hospital in Ladbroke Grove by collaborating with service users. Before I became a member of the project team, I knew very little about co-production or Patient and Public Involvement and Engagement (PPIE) but I did know that I wanted to share my lived experience of mental ill health to improve things for others.
I was pleasantly surprised by the way that I was included in all discussions about the project. When I made suggestions, they were taken up, or responded to. It wasn’t just my own experience that I drew upon - I recommended a resource from the British Heart Foundation that could be integrated in the project instead of the team creating one from scratch. There was a definite feedback loop between my contribution and changes to the projects.
The researchers clearly wanted to involve the service users. Whenever I went to a meeting I knew they would have answers for me! And when others were less confident about speaking in meetings, the researchers would make sure to get a contribution from them individually afterwards. Over time the team became like a family.
There are always limits to the influence you can have over any research project. For example, I was keen for clinicians working on the project to have discussions with patients about the side effects of drugs they are prescribed. For whatever reason, it wasn’t possible to make this a part of the project.
But overall, to be in the wards, talking to the patients, working with the staff, integrated in all stages of the project - that felt special. I’m proud that the SHINE project resulted in a patient-held physical healthcare record for people on mental health wards.
Can we take co-production further?
It’s definitely the case that proper co-production isn’t easy or always appropriate for every research project. At the same time, I feel that in allowing co-production to be defined loosely, we don’t do justice to what it should be. Being invited somewhere in the middle or at the end of a project to consult on a plain English summary or a leaflet isn’t true co-production in my view.
The NIHR Centre for Engagement and Dissemination has an important role to play in moving co-production forwards. Its resources are a good guide for researchers thinking about how they can integrate co-production into research and include many other examples of co-production working in practice.
We still have a way to go to make co-production central to health research. Let’s include more people with lived experience in the whole research process- there are many more like me out there.
The Shine project was a collaboration between the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North West London, Central and North West London NHS Foundation Trust and the Health Foundation