Operationalising Patient Engagement in Rare Diseases: Building, Validating, & Evolving KPI Frameworks

• Designing and implementing a global KPI framework for rare disease patient engagement through Unite for Rare, including internal data collection across affiliates and functions
• Measuring and publicly reporting patient engagement commitments via an annual fact sheet, incorporating feedback and validation from patient communities
• Addressing the “final link in the chain”: combining activity metrics with qualitative evidence to demonstrate whether patient engagement initiatives truly make a difference for patients

Speakers:

Donatella Decise

Global Director, Patient Engagement

Sobi