Abstract Background/Aims Sjögren’s disease (SjD) is a chronic systemic autoimmune disease that presents with a diverse range of clinical manifestations. In addition to sicca symptoms, patients frequently report fatigue, arthralgia, and neurological symptoms, amongst many others, significantly impacting their quality of life and daily functioning. While common, SjD remains diagnostically and therapeutically challenging due to its clinical heterogeneity, often subjective symptoms, compounded by limited healthcare professional awareness of the disease. The SYNERG-IE programme is a five-year Health Research Board-funded applied research initiative in Ireland focused on improving care for people with Sjögren’s disease (SjD) through advancing awareness, education and policy. Methods From inception, patient and public involvement (PPI) has been structurally embedded across all work packages, with governance, planning, and practice aligned with the updated 2023 EULAR recommendations for the involvement of patient research partners (PRPs) in rheumatology research. Results SYNERG-IE was co-developed with the national patient group Sjögren’s Ireland, a grant co-applicant and an active member of programme governance. A 0.4 FTE patient researcher was integrated into the core team, and a 10-member PPI Panel was established to support diverse lived-experience contributions across the research cycle. Following the PPI Ignite Network and EULAR’s guidance on early involvement, role clarity and mutual respect, we undertook detailed groundwork before beginning recruitment for the PPI panel. The panel’s remit, expected contributions and recognition structure were clearly defined. The panel is coordinated by the patient researcher and programme manager, reflecting EULAR’s recommendation for a named liaison role. Involvement requests are routed through a clear process to prevent tokenism. Recruitment combined an open call with targeted outreach to promote demographic and clinical diversity. Short informal conversations helped ensure mutual expectations and identify any accessibility needs. Recognising the fluctuating nature of SjD, the panel’s activities are designed to be fatigue and brain fog-friendly, including 45-minute meetings, frequent breaks, hybrid and asynchronous participation, and low cognitive load materials. SYNERG-IE governance model integrates PPI at multiple levels. The PPI panel focuses on shaping research through co-design while Sjögren’s Ireland participate on executive and steering committees with decision-making roles. Contributions are acknowledged through fair payment and regular feedback on how input has been used, which reinforces transparency and shared ownership. In line with EULAR’s recommendation for ongoing evaluation, the programme includes reflection on PPI annually and a forthcoming assessment of PPI activities and influence by end-2025. This will help inform how we adapt PPI in the future and contribute to broader learning across rheumatology research. Conclusion SYNERG-IE demonstrates how embedding PPI into the governance, delivery and design of research programmes can enhance trust and relevance. The model is relevant to other rheumatology contexts seeking meaningful and sustainable patient involvement. Disclosure N. Dunne: None. G. Tynan: None. A. Drury: None. J. Ni Gabhann Dromgoole: None. B. Bryan: None. F. Moriarty: None. E. McCarthy: None. M. Flood: None. C. Gamble: None.
Dunne et al. (Wed,) studied this question.