How to Apply Experience-Based Co-Design to Advance Patient/Family-centered Equity Across the Lifespan: A Hands-On Workshop

Individuals with serious illness report that clinicians do not fully ‘see’ their lived experience. The healthcare system often overshadows patients’ and families’ emotional, existential, and psychosocial needs, leaving them unmet and understudied. To design interventions that meet all needs that arise during a serious illness, we must illuminate how patients and their communities navigate serious illnesses across the lifespan beyond the gaze of clinical encounters. This session addresses a critical methodological gap: the dichotomy between palliative care’s holistic focus and traditional research methodologies that often prioritize rigid adherence to convention over individualized experiences.
Experience-based co-design (EBCD), a form of participatory action research, centers the lived experiences of patients, families, and clinicians as drivers for change. EBCD positions participants as active co-designers within a six-stage framework, integrating creative qualitative and design science techniques to foster partnership. Unlike traditional methods, EBCD ensures the research process itself becomes an act of equity and engagement, particularly for groups who frequently face systemic inequities and poorer outcomes.
Our transdisciplinary team leverages synthesized learning from our programs of research across diverse settings—including emergency departments, inpatient wards, intensive care units, and community clinics—to address suffering, respite access, and systemic administrative burdens through visual narratives and equity-driven interventions tailored for individuals across the lifespan and within context. By centering lived experiences, EBCD helps ensure that interventions are culturally relevant and have real-world applicability.

SESSION AGENDA
Welcome (5 mins): Overview of session goals
EBCD Primer (15 mins): A rapid introduction to co-design structures
Hands-on Work and Connection Facilitation (50 mins): Participants will apply EBCD principles to their own program of research or individual project using a structured approach while workshop faculty circulate to answer questions and identify potential collaborations
Conclusions and Next Steps (5 mins): Final reflections and distribution of a co-design resource repository.