Are Patient Values Genuinely Shaping Value Assessment, or Do They Remain Acknowledged but Underutilized?
Moderator
Ramiro E Gilardino, MSc, MD, Insights & Impact, Zurich, Switzerland
Speakers
Dan Ollendorf, MPH, PhD, Institute for Clinical and Economic Review (ICER), Boston, MA, United States; Chris Skedgel, United States
ISSUE: Across global HTA systems, broader value elements—caregiver burden, disease severity, financial toxicity, and whole-health impacts on families—are increasingly recognized conceptually. Collaborative initiatives like BRAVER and APACE have strengthened this evidence base, and HTA bodies formally acknowledge the need for patient-centered value. Yet, the practical reality remains: these elements rarely influence final assessments or pricing recommendations in a consistent, meaningful way. This gap is both methodological and structural. As HTAs evolve toward lifecycle approaches and precision medicine, evidence complexity has grown, but the capacity of patients and organizations to engage throughout the evidence lifecycle has not kept pace, leaving patient values acknowledged but structurally underutilized.
OVERVIEW: The session is structured for maximum debate: Ramiro Gilardino will frame the operational friction points, followed by four sharp, 5-minute stakeholder perspectives:
Dan Ollendorf (ICER) will frame and reflect on ICER’s experience integrating patient perspectives, including the challenges of operationalising broader value elements transparently. Lotte Steuten (OHE) will draw on BRAVER and APACE to examine how broader value elements remain difficult to quantify despite growing recognition. A patient expert will bring the patient community perspective on patient experience data frameworks and the practical realities patients face when attempting to influence HTA and payer decision-making. In a moderated discussion, the panel will examine what methodological, structural, and technological shifts are required to close the enduring gap between recognising patient values and embedding them as practical infrastructure to drive decisions.
Topic
Health Policy & Regulatory, Health Technology Assessment, Patient-Centered Research