Abstract Background and aims Global policy frameworks, including WHO Rehabilitation 2030 and the WSO Global Stroke Bill of Rights, recognise the essential role of stroke survivors in shaping systems. Yet implementation remains inconsistent and often reduced to symbolic participation. Despite broad consensus that survivor voices matter, there is limited guidance on how to use those voices to drive system-level change. To explore how survivor expertise can shift from recognition to action, we draw on interviews with SHINE’s international Advisory Board and its co-founders, lived, scientific, and policy expertise. Methods A qualitative thematic synthesis of semi-structured interviews with SHINE’s co-founders (stroke survivors) and members of SHINE’s Advisory Board (researchers, scientists and policy experts). Participants were positioned as experts, contributing insights on system design, accountability, and the realities of embedding lived experience within structures of care. Results Five cross-cutting themes emerged: These themes informed a five-part Survivor-Led System Design Framework, covering governance, inclusion, capability support, co-design processes, and accountability to guide national stroke plans, service commissioning, or research funding criteria. Conclusions The question is no longer whether to include survivors, but how. SHINE proposes a survivor-led framework that makes lived expertise a structural, measurable, and accountable element of stroke systems worldwide, advancing policy commitments and offering a practical, globally applicable roadmap for implementation. Conflict of interest S Broek: Received speaker fees from Bayer, Ipsen, Johnson research support of the Swiss Heart Foundation, the Swiss Brain League and the Horton Foundation; research grants from Medtronic and from Stryker, Rapid medical, Penumbra, Medtronic and Phenox, Boehringer Ingelheim; consultancies for Medtronic, Bayer, Boehringer Ingelheim, Boston Scientific, CSL Behring, Merck, Siemens and Takeda (fees paid to institution). Participation in an advisory board for AstraZeneca (former Alexion/Portola), Auzone, Biogen, AbbVie, Siemens, Corxel (fees paid to institution). Member of a clinical event committee (CEC) of the COATING study (Phenox). Member of the data and safety monitoring committee (DSMB) of the TITAN, RESCIND, LATEMT, IN EXTREMIS and RapidPulse trials. Past president of the Swiss Neurological Society and president-elect of the European Stroke Organisation. S. O. Martins: nothing to disclose. B. Norrving: nothing to disclose. F. Pezzella: nothing to disclose. S. Quinn: Bayer funded the educational video of our abstract at WSC25. S. Sacco: nothing to disclose. E. Sandset: nothing to disclose. M. B. Roaldsen: Dr Roaldsen was the International Trial Leader for TWIST which received funding mainly from the National Program for Clinical Treatment Research in the Specialist Health Service in Norway but also the British heart foundation, Swiss heart foundation and an unconditional grant from Boehringer Ingelheim. Her research has also been funded by the Norwegian Health Association. Received speaker fees from Daiichi Sankyo. Will receive speaker fee for Johnson & Johnson at the ISC26. Former member of the ESO Guidelines Board. Current Co-Chair of the WSO Guideline Committee, Co-Founder and Scientific Director of SHINE, Deputy Vice Chair of the European Life After Stroke Task Force and COO of SAP-E. Bayer funded the educational video of our abstract at WSC25.
Broek et al. (Fri,) studied this question.