Your Voice Matters: Using Participatory Film to Engage People with Chronic Pain in Public Involvement and Research

Sarah Harrisson, Samina Begum, Claire Toussaint, Mark Agathangelou, James Rattee, Melanie Holden and Krysia Canvin

No ayn5t_v1, SocArXiv from Center for Open Science

Abstract: Background People living with chronic pain (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, convening a co-production team of public contributors (n=4) with lived experience of chronic pain, expertise in community outreach and advocacy, a filmmaker, and a physiotherapist-researcher. We worked through five phases, pre-funding, design and production planning, story capture and filming, editing and dissemination in a series of online meetings. Members of the co-production team led outreach through trusted networks to involve an additional group of contributors (n=7) including people with no prior research involvement and non-English speakers (n=2). Reflective discussions were embedded throughout, and impact was documented using the Public Involvement in Research Impact Toolkit (PIRIT). Findings Co-production featured to shape the funding application, the vision for the film, outreach, flexible approaches to story capture, and jointly reviewed edits and supported dissemination. Public contributors within the co-production team were highly involved, shaping priorities, and key decisions about narrative focus, inclusion, and representation. They provided accounts of their experiences of living with pain and their views on public involvement and research, which formed the substantive content of the film. Outreach contributors exercised choice over how their experiences were shared, and their reflections incorporated through iterative team discussion. First‑person reflections from the co-production team illustrated 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.

Date: 2026-03-16
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Persistent link: https://EconPapers.repec.org/RePEc:osf:socarx:ayn5t_v1

DOI: 10.31219/osf.io/ayn5t_v1

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