Two weeks ago, I had the pleasure of attending an event hosted by the British Medical Journal (BMJ) and the Royal Society of Medicine (RSM) on the topic of research co-production. At the Ideas Alliance we are currently immersed in co-production projects and I feel like the values of co-production: power sharing, collective decision making, trust, creating things together, respecting all experiences and ideas are things that keep coming up in our work with communities and those working in the public sector. So, I was intrigued to see how co-production was happening in relation to the specific topic of medical research.

Being from a non-medical background it felt like a daunting space to step into, but reassuringly, so many of the themes discussed were things I have noticed and experienced across the public sector. It also helped that the event was attended by a great mix of clinicians, academics, researchers and patient and community representatives.

The meeting started with an introduction from Dr Simon Denegri, National Director of Patients, Carers and Public at the National Institute for Health Research (NIHR), followed by a briefing from Dr Gary Hickey, from INVOLVE which is part of and funded by NIHR to support active public involvement in NHS, public health and social care research.

Simon flagged up early that we need to come to terms and make peace with the notion that public involvement and co-production cannot always be perfectly representative, but instead, it is about trying to balance voices and achieve a ‘rounded view’. He advised starting where you can start, and always making efforts to be as open as possible to allow others in. His take suggested not getting tied up in knots about representing everybody because that is not possible and it can stop us from getting projects started. This felt like sound advice.

Later on in the event Gary shared INVOLVE’s key principles for co-producing a research project which were really helpful and could be applied to any project. INVOLVE’s key principles are:

• Sharing of power – the research is jointly owned and people work together to achieve a joint understanding
• Including all perspectives and skills – make sure the research team includes all those who can make a contribution
• Respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance
• Reciprocity – everybody benefits from working together
• Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock potential

I would recommend checking out their full guidance paper.

Gary was keen to stress that INVOLVE has provided a guide on co-producing a research project, not a blueprint because ‘ there is no single way of doing co-production’. This was encouraging to hear as I have often felt people are looking for the perfect toolkit, framework, strategy or process (whatever jargon word you wish to choose) for achieving co-production, when in fact I believe it is about a way of working, an approach, a mindset rather than a thing that can be ‘done’.

The only principle I think is missing from INVOLVE’s list is a theme that came up a lot during the event – the need for time. Co-production takes time and resource, and this often flies in the face of deadline driven research projects. But Gary did use a lovely term which I will be adopting. He highlighted the need to move away from ‘faux-production’ – consultation or involvement badged as co-production, as this can cause disappointment and distrust from people who expected more.

It was then great to hear from Niccola Hutchinson-Pascal from University College London and Kati Turner from University of London about the co-produced projects they have been a part of and their struggles and successes. This was really useful as I think there was a craving in the room for stories and examples of how co-production is taking place.

These presentations raised a key point about how we need to start by getting to know people and how often this is missed out. This reminded me of the asset based community development (ABCD) approach of ‘contact before content’ which we wrote about a couple of months ago.

We then broke up into groups and workshop-ed how to turn some of INVOLVE’s key principles into a reality on a co-produced research project. The issue of language came up on my table and later during the panel discussion a particular issue about the need to simplify language outside of an academic space. It was stressed that simplifying language is so important for relaying findings to those involved in co-producing the research and a wider audience beyond the academic and medical world. However, people spoke about their experience of resistance to this for fear of seeming to diminish the research or profession which is a fascinating example of the power of language.

The workshop discussions also raised issues that are specific to medical research and were interesting to learn about. Such as potential legal restrictions around medical trial research to do with accountability and decision making which can hamper co-production and power sharing.

The group discussions also started a lively debate about renumeration for advisors and participants and a big issue around where power sits when some people at the table are being paid to be there. This is something many people were grappling with and could be a great theme for a longer session for those who wanted to explore it further.

It made me think that there is an opportunity to hold a wider event on co-production in health and care which could explore the ideas and experiences around renumeration and learning from what has not worked in more depth. Participants in my group voiced a frustration about their experience of other events and presentations on great achievements of co-produced projects, which can put others off and make co-production feel unobtainable if everyone else is succeeding and you are struggling with it. This is why I found Nicola and Kati’s talks very refreshing in that they talked as much about what did not work, as what did.

It feels like there is potential to hold bigger events that create a space for sharing mistakes and triumphs and addresses key issues surrounding co-production. This would further add to the growing social movement for co-production, helping to connect things up and validate it as a useful approach for research and beyond. And we at the Ideas Alliance would love to be a part of something like that or making it happen!

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