Stroke survivors launch SHINE to push survivor-led care reform

Three women affected by stroke launched SHINE at the World Stroke Congress in October 2025 to put survivor experience into stroke research, care and policy. The group is now trying to turn lived experience into system-level changes for discharge planning, rehabilitation and long-term support.

Why it matters: - SHINE is trying to shift stroke care from patient testimony after decisions are made to survivor leadership at the start of the process. - The group says survivor input can improve discharge planning, rehabilitation, secondary prevention and long-term outcomes. - The launch comes as stroke remains a major cause of disability, with disproportionate impact on younger adults, women and underserved communities.

What happened: - SHINE, short for Survivors Honouring Inclusion, Networking and Empowerment, launched at the World Stroke Congress in October 2025. - The movement was founded and is led entirely by stroke survivors. - The founders are Stacie Broek, Stacy Quinn and Melinda B. Roaldsen. - The founders said they built SHINE to treat lived experience as expertise and to turn survivor insight into system change.

The details: - Broek is SHINE’s co-founder and executive director. - Roaldsen is the co-founder and scientific director. - Quinn is the co-founder and communications director. - Broek said SHINE is meant to ensure survivor voices are integrated upstream into care, research and policy. - Roaldsen said SHINE is focused on improving implementation of stroke services across the full treatment chain and advancing survivor leadership. - Quinn said her misdiagnoses showed how easily patient and survivor voices can be lost. - Quinn also created My Stroke of Hope to support carotid artery dissection and stroke survivors, especially young women. - All three founders experienced carotid artery dissection, a type of cervical artery dissection. - A 2024 National Institutes of Health report said cervical artery dissection affects about 3 in 100,000 people each year. - Dissections account for about 2% of all strokes and 10% of strokes in younger people, citing Yaghi et al., Stroke, 2024. - Broek said she relearned how to speak and write through intensive daily therapy after her stroke at 46. - Roaldsen said survivor expertise should influence decisions because survivors know the full treatment journey. - SHINE presented its abstract, From Voice to Value: A Framework for Survivor-led System Design in Stroke, at the European Stroke Organisation Congress. - The abstract was later published in the European Stroke Journal. - SHINE said survivors often face gaps after discharge, including fatigue management, emotional regulation, continuity across specialists and social support. - Broek said a standardized, survivor-led discharge plan would be a top immediate improvement. - SHINE said the biggest gaps in secondary prevention and long-term support affect people with fewer resources, women, younger adults and rural or underserved communities. - The group said stroke-related mobility, speech and cognition challenges can make it harder for people to get help. - Stacy said equity means culturally and contextually relevant support that measures what matters to survivors.

Between the lines: - The launch reflects a broader push in healthcare to move people with lived experience from symbolic roles into decision-making roles. - SHINE’s message is that survivor-led design is not just advocacy; it is a way to make care and research more grounded and relevant. - The founders are also arguing that stroke systems miss key outcomes when they focus only on clinical measures instead of survivor goals and daily functioning.

What's next: - SHINE plans to keep building a global network of survivors, clinicians, researchers, organizations and policymakers. - The group is seeking more meaningful integration of lived experience into stroke care, research and policy. - The founders want survivor-informed changes to influence discharge planning, service design and long-term support. - SHINE is promoting its work through the organization's LinkedIn page.