Uncovering the True Cost of Healthcare (Workshop Executive Summary)
IVI’s Patient-Centered Economic Impacts initiative highlights a critical gap in healthcare research: the financial, time, and life burdens borne by patients and caregivers remain largely unmeasured. Through a six-part workshop series and learning reports, this work offers a roadmap for better capturing these impacts—informing more patient-centered research, funding decisions, and healthcare systems that reflect real-world […]
Uncovering the True Cost of Healthcare—Beyond Productivity: Capturing Long-Term Education and Job Impacts (Workshop #6)
This report revealed the need to better understand the financial impacts, particularly job and education impacts, patients and caregivers experience. These impacts are real but often unrecognized in research and practice. The workshop highlighted the critical disconnect between the reality of patients and caregivers experiencing health conditions and the systems that individuals must navigate during health challenges, including health care, workplaces, and educational institutions.
Uncovering the True Cost of Healthcare: Quantifying the Cost of Stress for Patients and Caregivers (Workshop #5)
This report explores the economic impacts that patients and caregivers experience from the challenges of navigating chronic stress from a health care condition. Stress is not only a health issue but also an economic one and there is a pressing need to identify potential ways to account for the financial impacts of stress in research.
2025 PCORI Annual Meeting Poster “Co-Design in Practice: Lessons from Engaging People with Lived Experience in Economic Impact Research Workshops”
The poster, presented at the 2025 PCORI Annual Meeting, summarizes the development of a practical checklist to help researchers consistently and meaningfully engage patients and caregivers throughout the lifecycle of rare disease value research (including CER and HTA), ensuring patient perspectives are systematically incorporated into study design, conduct, and dissemination. VIEW POSTER
Uncovering the True Cost of Healthcare: Incorporating Patient Costs into Research on Diagnostic Delays (Workshop #4)
This learning report summarizes Workshop #4 of the Uncovering the True Cost of Healthcare series, which examined how diagnostic delays create substantial and avoidable economic burdens for patients and caregivers.
Uncovering the True Cost of Healthcare: The Economic Realities of Caregiving (Workshop #3)
The Uncovering the True Cost of Healthcare: The Economic Realities of Caregiving Workshop #3 Learning Report summarizes a February 2025 multi-stakeholder convening hosted by IVI that examined the often-overlooked financial, career, and health impacts of unpaid family caregiving.
Uncovering the True Cost of Healthcare—Time is Money: Capturing Time Effects of Economic Impacts (Workshop #2)
This learning report summarizes Workshop #2 of the Uncovering the True Cost of Healthcare series, which focused on how time costs—the time patients and caregivers spend getting care, navigating the healthcare system, and self-advocating—create significant economic and quality-of-life impacts.
Uncovering the True Cost of Healthcare: Patient Journey Mapping to Inform Economic Impacts (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.
Uncovering the True Cost of Healthcare: Prioritizing Patient Perspectives
Join the Innovation and Value Initiative to prioritize the patient and caregiver perspective in assessing economic impacts beyond direct medical costs.
2023 PCORI Annual Meeting Poster “Economic Impacts Framework”
This poster summarizes a PCORI-funded IVI project to develop a patient-centered framework for capturing the full range of economic impacts of illness and healthcare on patients and caregivers.