How Public Involvement Shaped the Pain-at-Work Toolkit for People with Chronic Pain
Full Reference: Blake, H, Abbott-Fleming, V, Greaves, S, Somerset, S, Chaplin, WJ, Wainwright, E and Walker-Bone, K, 2025. Five years of patient and public involvement and engagement (PPIE) in the development and evaluation of the Pain-at-Work Toolkit to support employees’ self-management of chronic pain at work Research Involvement and Engagement. 11(81), https://doi.org/10.1186/s40900-025-00757-5
In this paper, Blake and colleagues describe how patient and public involvement and engagement (PPIE) was intentionally built into every stage of designing, testing, updating, and evaluating the Pain-at-Work Toolkit - a digital resource to help employees manage chronic pain in the workplace. The authors argue that although involving people with lived experience and relevant stakeholders is widely recognised as valuable in health research, detailed reporting of how this involvement happens is rare. To address this gap, they provide a transparent account of PPIE over five years (2019–2024) using the GRIPP2-SF reporting framework, documenting what was done, who was involved, and how their input influenced both the toolkit and the research process.
The Pain-at-Work Toolkit aims to help working-age adults with chronic or persistent pain by offering practical advice on coping strategies, workplace rights, accessing adjustments, and self-management techniques tailored to employment contexts. The research team embedded PPIE across four phases of work: (1) toolkit co-creation, (2) prototype evaluation, (3) review and update, and (4) feasibility testing in a trial. In each phase, people with lived experience, employers, healthcare professionals, and other stakeholders were directly involved in shaping decisions, not merely consulted after the fact.
In Phase 1 (Co-creation), the team started with a stakeholder workshop and used surveys with employees living with chronic pain (274 respondents) and employer representatives (107 respondents) to gather diverse views on what the toolkit should include. PPIE-partners (people with chronic conditions who were co-authors) co-led these activities with researchers, ensuring that the priorities of users were embedded early on. An expert peer review panel of 40 stakeholders, including public contributors, provided further feedback on content and presentation.
Phase 2 (Prototype Evaluation) involved sharing the prototype toolkit with potential end users, gathering feedback from 104 working adults with chronic pain through surveys and interviewing a subset of 15 for deeper insights. Again, PPIE-partners actively facilitated these activities, helping interpret feedback and refine the toolkit. This phase ensured the toolkit was usable, relevant, and practical before wider testing.
During Phase 3 (Review and Update), the toolkit was revisited to ensure relevance after the COVID-19 pandemic. A public concept-mapping exercise with 20 contributors and additional expert peer reviews ensured content stayed up to date with users’ evolving needs.
Finally, Phase 4 (Feasibility Testing) embedded PPIE within a workplace trial that recruited 380 employees with chronic pain across 18 organisations. PPIE-partners and contributors helped shape recruitment materials, supported dissemination through social networks and events, and sat on trial advisory and steering groups to ensure trial processes were meaningful and low-burden.
Across all phases, the authors reflect on the impact PPIE had on the toolkit and research process, including enhancing relevance, accessibility, and methodological rigour. They also outline key components for successful involvement, challenges encountered, and lessons for future research. The paper offers a detailed example for researchers seeking to integrate meaningful public involvement in complex health intervention development.