The Keele Osteoarthritis self-management guidebook

The Keele Osteoarthritis Guidebook

Tell us about your project

A Guide for People Who Have Osteoarthritis was last published in 2014. It's a self-management resource for people over 45 with osteoarthritis, available in print and online. Content was based on research funded by Arthritis UK, the Economic and Research Council and NIHR, and developed with people with osteoarthritis. It's since been rolled out in England and adapted for Scotland, the Netherlands, Denmark, Portugal, Norway, New Zealand and West Africa.

This project updated the guidebook's design and information in line with current evidence, national guidelines and patient need, using a User Centred Design and co-production approach that followed the National Standards for PPIE.

How did you involve people?

People with osteoarthritis identified updating the 2014 guidebook as a priority, while researchers and clinicians factored in the updated 2022 NICE guidelines and emerging research.

• July 2023: a Knowledge Broker met with patients and the public to scope the context and requirements.
• October 2023–August 2024: a group of PwA (People with Arthritis), healthcare professionals (physiotherapists, GP) and researchers held 5 co-production meetings.
• Roles, working methods and feedback processes were agreed at the outset.
• PwA steered development throughout and will be involved in dissemination.

How did you find people to involve in your project?

• Keele University's Research User Group, a large PPIE group with many members living with osteoarthritis, provided people with lived experience and an interest in design.
• The Link Group (PPIE in Knowledge Mobilisation) was also invited, adding insight into dissemination and knowledge mobilisation.
• Combining both groups helped keep the resource relevant, useful and implementable.

How did you support people in your project?

The project followed the National Standards for PPIE, offering inclusive ways to take part and building relationships through trust and two-way communication.

• Mix of online and in-person meetings.
• Paper and digital versions of the guidebook available.
• Transcription provided for online meetings.
• Agendas and recaps at each meeting for continuity.
• Members reimbursed for time and travel.
• Ongoing access to the Knowledge Broker throughout the project.

Can you give more examples of how you worked with them?

The project used co-production for all decision-making and design, bringing stakeholders together as equal partners with no hierarchy, so both PwA and healthcare professionals' needs were understood.

Everyone's expertise was valued, with space to say what mattered most in an OA self-management resource. Communication was always in plain language, and PwA shaped the guidebook's structure, real-life quotes, links to further resources, colours and illustrations.

What impact did it have?

The updated guidebook is nearing completion. Co-producing it with PwA has resulted in an appealing, relevant resource with up-to-date evidence and multiple self-management options, aimed at improving patients' lives.

• Group members feel ownership of the resource and will champion it during dissemination
• Healthcare professionals, PwA and knowledge brokers learned from each other through the process

What tips would you give another researcher?

• Allow more time than expected — we planned 2–3 meetings but needed 5, plus ongoing communication.
• Really listen to and reflect on PwA feedback; co-production is about shared decision-making, not a tick-box exercise.
• Stay open and flexible to build trust, creativity and idea-sharing.
• Identify your stakeholders early and engage them from the start.
• Provide a safe space for sharing experiences and questions.
• Where views differ, discuss in detail and work toward compromise, drawing on independent stakeholders if needed.

To learn more, download a copy of The Keele Osteoarthritis Guidebook.