Human relationships make authentic co-production happen

Advisory group members Clare Dawson, Dawn McBean, Sally Percival, Sudhir Shah, Oli Williams and Niccola from UCL Centre for Co-production share their thoughts on the first Dissecting Health Research session

Back in May the Centre for Co-production shared an upcoming opportunity to work with Oli Williams, a researcher funded by THIS Institute to conduct a study of different definitions and practices used in co-production. Oli was looking for people to join a group advising him on his work.

Meet the team

The advisory group members are:

Clare – I’m a lover of live music, play fighting with dogs, and a recovering lawyer with an unhealthy interest in true crime. As someone living with incurable illness I’m always keen to make sure patient experience is represented and I’ve worked within research projects, medical education and charities that make this their aim.

Dawn – I’m an activist, advocate and self-management practitioner of physical and mental health wellbeing. I work in co-production, including research to influence and improve mental health care management in practice and education for the 21st century. I like starting my day early with something cheerful to set my mood and I have a special relationship with proper ice-cream, especially good when added to my favourite, fresh blueberries! For a good giggle, I enjoy reading 1970s Mills and Boons or indulge my fantasy of being Lee Ritenour on my acoustic guitar.

Sally – I co-chair the National Co Production Advisory Group (NCAG) and The Think Local, Act Personal (TLAP) partnership, but more importantly I care for my son and step-daughter, they both use a personal budget for their care ensuring that choice and control remains with them. I truly believe that “The happiest of people don’t necessarily have the best of everything; they just make the most of anything.”

Sudhir – I’m a retired engineer and a carer. I am married with 2 daughters and 3 grandchildren. I love wildlife and most of sports especially football and cricket. I have been involved in patient public involvement and co-production with various NHS organisations.

The facilitators are:

Oli – a sociologist who works at King’s College London and researches co-production.  I support Southampton Football Club and Chelsea Football Club Women. One of the last trips I made before lockdown was to The City Ground in Nottingham, where I wildly celebrated Beth England scoring an injury-time winner in the League Cup Final.

Niccola – an avid korfballer, mum to nearly 10 month old Ishé, and involved in the development of UCL Centre for Co-production.

In our first session we explored what we think co-production is, as well as what it isn’t, by engaging with a recent academic debate that played out in two research articles – ‘The dark side of co-production: do the costs outweigh the benefits for health research?’ and ‘Lost in the shadows: reflections on the dark side of co-production’ and also the comic strip that goes with this article.

We appreciated having the opportunity to review and reply to these academic articles. Some of us remembered them being published and wanting to contribute to the conversation at the time and now, months later, we have finally been able to! One of us even recalled where we were when we read the first article and exactly how we felt in that moment.

Saying something is ‘open access’ just doesn’t cut it

Just because an article is ‘open access’ doesn’t mean that people outside of academia, who are not normally paid to read research articles, have the time to read and respond to them. For most researchers ‘open access’ only seems to mean that everyone can download their article, but if an article is really to be accessible to all then it needs to be written in a way that everyone will understand (not just academics). We think researchers should do more to give  people the opportunity to read their work. We have all been part of co-produced projects related to health and healthcare, so because these articles were about co-production in health research we felt we had relevant experience to comment on them.

Dissecting the articles

Some of us tried to ‘get inside the mind’ of the researchers and others focused on our own experiences and how they related to what was written in the articles. Even though we could tell we weren’t the intended audience – you can tell when researchers write for each other because they tend to write things in an over-complicated way – we found some positives in both articles, as well as a number of negatives. We reviewed the articles in the order they were published so we talked about ‘The dark side of co-production’ first.

The dark side of co-production

We agreed that it was useful because it got us to think about some of the possible downsides of co-producing research. We tend to focus on the positives! But the way the authors described co-production was not how we would describe it. The strong takeaway message seemed to be that co-produced research was inferior because it was less ‘scientific’. A lot of the time it seemed like the experiences and views of patients, carers, service users and the public were unimportant to the authors. This made some of us angry because we felt it was patronising.

We also discussed what we felt was the mis-labelling the problems as being inherent to co-production, when really they were talking about systemic problems that make doing good co-production difficult. The authors seemed to dismiss the value of co-production and therefore dismiss the value of our experiences and the contributions we can make to research. The focus seemed to be on what the ‘dark side’ of co-production was for researchers, not for us. We discussed how co-production isn’t always easy but it seemed like these authors were throwing the baby out with the bath water. They seemed to be missing the bigger picture.

Lost in the Shadows

For some of us, the second article ‘Lost in the shadows’ made many of the arguments we would have made too. For others it was still too wordy and the authors didn’t always explain their arguments clearly. Although relationships were mentioned, some of us felt there wasn’t enough emphasis placed on the importance of the human relationships needed for authentic co-production to happen. The authors were critical of the first article for focusing on using co-production to make their research better – rather than to make it more inclusive and to make society fairer – but we see both of these as important reasons to co-produce research.

We have had experience of being involved in ‘co-production’ projects that were just a tick-box exercise. This article made it clear that patients, service users, carers and members of the public need to have far more influence and input in the research for it to be true co-production. We thought this was a helpful point to make and hopefully will stop researchers in the future just working with us to tick a box, and then calling this co-production. In addition, we liked the inclusion of the comic strip as we felt it gave us a snapshot overview of the article which was really helpful.

Exploring our differences

Reviewing the articles also prompted an interesting discussion about how we refer to ourselves and want to be referred to in research and by researchers. For some of us the term ‘service user’ feels horribly de-humanising – it makes us feel more like a number than a person. For others the term ‘service user’ was an important part of our identity and referring to ourselves as a ‘service user’ helped us feel more comfortable about accessing healthcare. This was a useful discussion because it showed that not everyone is the same, and words can mean different things to different people.

What’s next for the group?

We will be having another group session soon where we’re planning to pick up the discussion of how we refer to ourselves, so we can give more time and attention to this important topic. We will also discuss the progress Oli has made with his project and address any key decisions that need to be made. To ensure we make the most of our time together the group agreed that it would be a useful strategy to meet as and when key decisions need to be made. The pandemic makes it difficult to plan ahead but Oli expects that the next time we meet it will be to discuss his early interpretations of the data he has already collected. We’re looking forward to getting stuck into this soon!