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National Institute for Health Research

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Sometimes you just have to jump in and make a splash! Co-producing research with patients, carers and public partners

Sometimes you just have to jump in and make a splash! Co-producing research with patients, carers and public partners

01 August 2018

Tracy Johns, Public Involvement Lead, RDS East of England

I’m not naturally brave or a risk taker and I prefer to invest a lot of time pre-planning before starting anything. However, it was my intuition and empathy that led me to co-producing research about independent living services with a team of disabled service users. This was a long time ago and before I had heard of the term co-production in research, and I probably called it participatory action research at the time. Labels aside, the reason I chose this approach was purely a matter of common sense. Lacking in personal lived experience of disability, I recognised that the research would be much more relevant and credible if I carried it out in partnership with people who did have such lived experience. This recognition was so strong that I didn’t really examine the potential pitfalls for a change and I suppose I jumped in! I had to negotiate additional funds and time and then, forgive the overuse of the metaphor, I had to learn to swim very quickly. At times I felt out of my depth and I think this was largely a result of me learning to balance the tension between me taking control as the project lead and letting go/sharing the power to allow the creative and democratic process to flourish. However, the rewards far outweighed the challenges and I will never forget witnessing the power of five disabled co-researchers presenting our shared knowledge and recommendations to the sponsors. They managed to gain immediate commitment to improvements they had suggested. In addition, they were invited to continue their work in helping to the further shape the services that they would be beneficiaries of.

As the INVOLVE Guidance points out, it is the quality of the relationships which is the cornerstone of good co-production. In my experience it is this aspect which is especially challenging and rewarding in equal measure. We are not all naturally social and confident and traditionally the culture of health and academia has been formal and hierarchical. Co-production means working differently and establishing more personal and reciprocal relationships. We cannot expect our public partners to be open if we are not prepared to be more transparent ourselves. Of course, there are boundaries and we need to be honest about our own personal limitations – how much are we willing to give to building these new relationships?

Shared decision making between people with a diversity of skills, experience and knowledge can require a certain amount of patience and resilience. It is good to expect that there will be conflict and disagreements and that this is probably a sign of a strong and trusting partnership. My advice to those embarking on co-production is to find a co-applicant who has previous experience and the right people skills to assume the role of nurturing the co-production process and brokering the relationships – a ‘co-production guardian’. This person can be responsible for coordinating appropriate support to all other members of the team and ensure the co-production stays on track.

I would also advise establishing relationships as early as possible to allow everyone to feel an equal partner in the shared decision making, and a sense of genuine shared ownership and purpose. Make the effort early to go out and meet people where they are, and be mindful about being as relaxed as possible. Try not to go to a first meeting with a fully prepared project plan and be genuinely open to learning something new and exploring new ways of doing research together. We have developed our Equal Partners Workshops to provide a safe space for researchers and members of the public to explore and experience some of these challenges together.

If you're feeling inspired to jump in and encompass co-production in your research, do get in touch with your local RDS. We have research advisers who have experience with co-production and strong links with many user involvement groups, including INVOLVE itself. We'd be very happy to help you make a splash!

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