Survivor Involvement Resources
Lived experience as essential knowledge: Infographic
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In February 2024, a collaborative workshop engaging VAMHN Lived Experience Advisory Group members and UKPRP VISION Consortium researchers explored the role of lived experience (LE) as a form of knowledge and evidence, addressing its placement within the “evidence hierarchy” and the impact of language on engagement. Key points included the significant influence of labels and power dynamics in determining which experiences are deemed valuable, the potential negative connotations of the term “lived experience,” and the necessity for lived experience to be integrated into research processes rather than being an afterthought. Discussions underscored the evolving nature of lived experience, the challenges in showcasing expertise, the importance of ethical considerations, and the need for ongoing support and safe spaces for meaningful engagement.
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The workshop emphasized that lived experience should be a foundational element in research, akin to an integral ingredient, not merely an optional addition. The discussions were summarised as an infographic, illustrated by Jenny Leonard (www.jennyleonardart.com) which you can see here.