Learning Workshop #1
This learning report summarizes the first workshop in the Uncovering the True Cost of Healthcare series, which explored how patient journey mapping can be used to identify and understand the full range of economic impacts experienced by patients and caregivers. Convened in July 2024 by the Center for Innovation & Value Research, the workshop brought together patients, caregivers, researchers, and other stakeholders to examine how costs accumulate, shift, and interact over time across the care journey. Through lived-experience narratives, methodological guidance, and group discussions, participants highlighted the importance of trust, respectful engagement, and mixed methods to uncover hidden and downstream costs—including caregiver burden, lost work, transportation, mental health impacts, and interactions with social service systems. The report outlines practical guidance for conducting patient experience mapping, emphasizes using journey maps to reveal systemic gaps and ripple effects, and concludes that co-developed patient journey maps can meaningfully inform research design, policy decisions, and efforts to reduce financial burden in healthcare.
