Democratising death: citizen science, deliberation and data

This interactive workshop will explore public participation in the context of death, dying and bereavement, moving beyond conventional ‘patient and public involvement and engagement’ (PPIE) approaches to understanding participation as a means of redistributing power. Publics and patients are often positioned as passive subjects, consultees, or data sources, rather than as agents who can shape how death, dying and bereavement are understood and responded to. Recent debates on assisted dying have demonstrated how these issues are not restricted to clinical or academic spaces, and of the importance of debating these issues in the public sphere.

This event will explore epistemic injustice in death, dying, and bereavement – whose knowledge counts, who is recognised an expert, and who defines the research, practice, and policy agenda?

We will explore these challenges through three complementary, real-world approaches, hearing from organisations putting this into practice:

• Citizen Science - citizens as knowledge producers with UCL Citizen Science Academy
• Deliberative democracy - public debate and decision-making with Innovation for Policy
• Data democracy - collective data interpretation and knowledge generation with Just Knowledge

You will hear from practitioners and public participants and will have the opportunity to explore and debate these approaches in practice with a range of participants across disciplines.

Refreshments will be provided, places limited, please book a place to attend.