June 18, 2026 5pm London UK

Discussants:

Lindsay Birrell
Aimee Walker-Clarke, PhD
Nikki Holliday, MSc
Kerry Leeson
Sophie-Mira Roberts

Discover how a lived experience–led approach can shape every stage of health and care research. Using the RareCare programme as a practical example, this session will explore how an intentional design placed lived experience at the centre of the research, shaping the overall model, with the development of a peer researcher programme as a central component. We’ll share how this translated into practice through interview training and delivery, alongside reflections from those directly involved. Bringing together real-world insights and personal perspectives, the session will highlight how this model can strengthen representation, trust, and impact across health and care research far beyond rare disease. This work is independent research funded by the National Institute for Health and Care Research (NIHR) (RareCare: Evaluation of England's Rare Diseases Action Plans, NIHR205983). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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