Your voice matters: using participatory film to engage people with chronic pain in public involvement and research

BACKGROUND: People living with chronic pain (≥ 3-months) often struggle to participate in valued activity (for example, family life, work and in their community) and are under-represented in public involvement and research. We aimed to broaden awareness and encourage engagement in public involvement and research among people living with chronic pain. We outline how we co-produced a film to capture experiences of chronic pain and the potential benefits of engaging in public involvement and research. METHODS: We undertook a participatory filmmaking project guided by UK Standards for Public Involvement. A co-production team of public contributors (n = 4), all with lived experience of chronic pain and experience in community outreach; a filmmaker; and a physiotherapist-researcher worked together across 5 phases, pre-funding, design and production planning, story capture and filming, editing and dissemination in a series of online meetings. The public contributors recruited additional contributors with lived experiences of chronic pain (n = 7), including individuals with no prior research involvement and 2 non-English speakers. Reflective discussions were embedded throughout, and impact was documented using the Public Involvement in Research Impact Toolkit (PIRIT). FINDINGS: Co-production shaped all stages of the project. Public contributors within the co-production team were highly involved, using lived experience to shape priorities, and key creative, strategic and practical decisions including outreach, story capture, translation and sharing the final film. Their lived experiences formed the core content of the film. Flexible and person-centred approaches enabled contributors to exercise choice over how their experiences were captured, represented and shared. Our approach supported inclusive, accessible involvement; ensured authentic and culturally sensitive representation. It also demonstrated benefits for contributors. First‑person reflections from the co-production team illustrate how individuals experienced the project, including increased confidence, connection, and validation. CONCLUSIONS: These insights illustrate how participatory filmmaking can move involvement beyond consultation toward shared power and meaningful partnership. The co‑produced film which is publicly available, Your Voice Matters: Living with Chronic Pain, Shaping the Future of Research, was a tangible output of this process and a resource to help people make sense of chronic pain and research involvement, and to encourage future engagement.