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

Background: Patient and public involvement and engagement (PPIE) is essential for the design, delivery and dissemination of high-quality, meaningful research. However, reporting of PPIE contributions is seldom transparent or consistent. We aimed to document and critically reflect on the process of embedding robust PPIE throughout every stage of the research cycle in the co-creation and evaluation of the Pain-at-Work (PAW) Toolkit, a digital resource to support working age adults with self-managing chronic pain at work. Methods: Using the Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) checklist we describe and reflect on PPIE input into four phases of the PAW Toolkit development and testing taking place over five years, all co-led by PPIE-partners, including: (1) Co-Creation: with stakeholder consultation (n = 27), surveys with employees (n = 274) and employers (n = 107), expert peer review (n = 40), (2) Prototype Evaluation: with end-user testing (n = 104), end-user interviews (n = 15), expert peer reviews (n = 15), (3) Review and Update: with a public concept mapping exercise (n = 20) and expert peer reviews (n = 15), (4) Feasibility Testing: with PPIE-partners (n = 2), PPIE-members (n = 5), PPIE-contributors (n = 10). Results: PPIE was successfully embedded at every stage of the research cycle. Our PPIE-partners co-led activities to gather the views of diverse stakeholders (PPIE-contributors) such as healthcare professionals, employers, and people with lived experience of chronic pain. We outline ‘how’ PPIE took place at each phase, and ‘who’ was involved in each activity. We describe PPIE results in terms of the impact of PPIE on PAW Toolkit development (Phase 1–3) and the research process (Phase 1–4). Conclusion: Our PPIE partnerships and shared decision-making led to the co-creation, update and evaluation of the PAW Toolkit, an intervention which is appropriate, meaningful and relevant to working-age adults living with chronic pain. We present components for successful PPIE, and map our Pain-at-Work PPIE to recommended components. Components for successful PPIE, challenges and mitigations are reflected upon. PPIE enhanced the ‘real-world’ value of our intervention and methodological rigour of the research processes. Our worked example of PPIE and transferable recommendations could be used to guide other researchers embarking on national or international health research. Trial registration (phase 4): ClinicalTrials.gov NCT05838677; registered 01/05/2023 https://clinicaltrials.gov/study/NCT05838677. International registered report identifier (IRRID): DERR1-https://doi.org/10.2196/51474.