Co-production and knowledge mobilisation of an updated osteoarthritis self-management guidebook

The Keele Osteoarthritis (OA) guidebook was last published in 2014. It is a self-management resource for people over 45 years of age with osteoarthritis, available in both printed and online versions. Content was based on findings from a number of different research projects funded by Versus Arthritis, the Economic and Research Council and the National Institute for Health and Care Research (NIHR). It was developed with people with osteoarthritis and has since been rolled out for use in England and translated and culturally adapted in Scotland, the Netherlands, Denmark, Portugal, Norway, New Zealand and West Africa.

This project aimed to update the design and information in this patient facing resource in line with current evidence, national guidelines and patient need, with a group of PwA, healthcare professionals and researchers. The project took a User Centred Design approach using co-production methods and followed the National Standards for PPIE.

People with osteoarthritis identified a need to update the existing Keele Osteoarthritis Guidebook (2014) as a priority for providing current evidence-based self-management resources for PwA. At the same time, researchers and clinicians were aware of the updated 2022 NICE guidelines as well as new and emerging research in the area that needed to be included.

In July 2023, a Knowledge Broker met with patients and the public who have experience with knowledge mobilisation, co-production and implementation work to look at the context of use and specify the requirements of use. Following this, a small group of PwA, healthcare professionals (physiotherapists, GP) and researchers were invited to attend 5 co-production meetings with the same Knowledge Broker which took place between October 2023 and August 2024 to co-design the new version of the guidebook. At the first meeting, the group were asked how they wished to carry out the work (for example, online vs in person meetings, what the project would involve, how they would provide feedback). Roles were clarified and time was given for reflection and questions. PwA were involved throughout the process and steered the development of the new version. When completed, they will also be involved in its eventual dissemination and knowledge mobilisation.

At Keele University we work closely with a large patient and public involvement in research group called the Research User Group, of which a significant proportion of people live with osteoarthritis. We identified people with lived experience with an interest in design from this group. Additionally, we invited people who have been part of the Link Group (patient and public involvement in Knowledge Mobilisation) to take part, in order to include insight into eventual dissemination and knowledge mobilisation of the resource. Including both people with lived experience of osteoarthritis and people with experience of mobilising knowledge and co-producing resources helped us to maintain the relevance, usefulness and appeal of the resource for eventual successful implementation.

The project followed the National Standards for Patient and Public Involvement and Engagement. This included providing inclusive opportunity to be involved, with different involvement needs addressed (for example, a mixture of online and in person meetings, using both paper and digital versions of the guidebook to refer to, including transcription on online meetings) and working together in a way that valued everyone’s contributions equally and built relationships through reflection, two-way communication and provision of a trusted, supportive and safe environment in which to share lived experience. Each meeting had an agenda and a recap of what we had discussed at the previous meeting and what had been achieved in the meantime, this supported understanding, continuity and an opportunity for questions. Members were reimbursed for their time and travel and were able to contact the Knowledge Broker at any time during the project.

The project followed a co-production approach to decision-making and guidebook design and included all relevant stakeholders who would eventually use the guidebook working in partnership, without hierarchy. This was so we could understand the needs of both PwA reading the guidebook and healthcare professionals signposting people to the guidebook. It was important to recognise all parties have valuable expertise and experience and give them space to express what matters to them most in an osteoarthritis self-management resource openly and honestly, engaging them closely in the design and eventual dissemination and knowledge mobilisation of the guidebook.

Communication throughout the project was always in plain language and PwA helped us to maintain plain language in the guidebook content. They made decisions on the guidebook’s structure, use of real life lived experience quotes, links to further resources, colours and illustrations.

The new version of the guidebook is now nearing completion. By co-producing the guidebook with PwA for PwA, the finished product is an appealing and relevant resource which contains up to date research evidence and provides PwA with many different options on how best to self-manage their condition. The hope is that this will have a real, tangible impact on improving the lives of PwA.

All members of the group were able to take ownership of the resource and will be champions of it during dissemination and knowledge mobilisation phases, increasing its impact.

Healthcare professionals, PwA and knowledge brokers were able to learn from each other through respectful discussion and communication.

Be aware of the time it takes to truly co-produce resources such as this. We had anticipated 2-3 meetings; however, this was upped to 5 plus communication in between meetings. PwA will continue to be involved throughout the next stages of evaluation, dissemination and knowledge mobilisation.

Take the time to truly listen to and reflect on comments from PwA. Patient and public involvement and co-production approaches are not just tick box exercises, they give us an opportunity to share decision making, learn from each other, step back and encourage PwA to step forward. Having an open and flexible approach will encourage trust, communication, creativity and idea sharing which will ultimately result in resources which are relevant, useful and appealing to the population we are trying to reach. Take time to understand who your relevant stakeholders are and engage with them at the earliest opportunity. Provide a safe space for sharing experiences and questions.

Co-production with stakeholders from different contexts can sometime result in differences in opinions. Any disagreements were discussed in detail and compromises reached where possible, often through consensus and engaging with independent stakeholders outside of the immediate co-production group.