Valuing Vanishing Voices: creating empowerment and inclusion in health economics

Healthcare investments could benefit from a critical voice—the affected person's own. Current health economics and outcome research methodologies are exclusionary for conditions like dementia, where quality-of-life assessment is predominantly proxy-reported, narrowly defined, static. This approach silences persons' voices and ignores their lived experiences, resulting in a costly 'sickcare' system that treats symptoms while failing to capture or improve meaningful person-centered outcomes. This research combines longitudinal and creative approaches, grounded in bioethics, and engaged practice, to advance our understanding of the quality-of-life assessment in dementia and develop beyond the state-of-the-art methodologies to engage with, measure, and value lived experiences in health economics and outcomes research. Key deliverables: 1—Longitudinal dataset examining quality-of-life assessment from mild stages through progression, with new knowledge into the temporal dynamics of self-proxy reporting and Lewy Body Dementia. 2—Novel application of established group decision-making technique in quality-of-life valuation by co-designing dementia-accessible choice tasks with creative solutions and longitudinally examining collective preferences. 3—Exploratory proof-of-concept ecosystem investigating routine quality-of-life self-monitoring capabilities, interactive visualization methods for sharing experiences and adaptive interfaces. 4—VOICE: evidence-based toolkit and recommendations for health economics quality-of-life assessment in dementia, adaptable to other progressive conditions. 5—Capacity and leadership in Brain Health Economics through structured mentorship and global network.