Learning Report #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. Convened by the Center for Innovation & Value Research in June 2025, the workshop brought together patients, caregivers, researchers, and advocates to explore how delays from symptom onset to accurate diagnosis—particularly in rare and complex conditions—lead to lost income, out-of-pocket expenses, travel costs, caregiver strain, and long-term social and emotional harm. Through patient storytelling, including a detailed lived-experience case study, and presentation of emerging research, patients highlighted that diagnostic delays are not just clinical failures but system-level issues with profound financial consequences. The report emphasizes the need for patient-informed definitions of diagnostic delay, mixed-methods research that captures avoidable costs, and greater attention to equity and access barriers, concluding that incorporating patient costs into diagnostic research is essential to improving care quality, reducing harm, and informing policy change.