Explore the Agenda
8:30 am Check-In & Coffee
9:20 am Chair’s Opening Remarks
Reporting the Right Metrics Across Stakeholders to Earn Trust, Influence Decisions & Accelerate Progress
9:30 am 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
10:00 am Proving the Intangible by Translating Qualitative Patient Insights into Business Metrics
- Combining qualitative and quantitative data to create credible evidence of patient engagement impact
- Validating and calibrating patient-reported insights using robust methods to ensure leadership confidence
- Framing complex qualitative data into actionable business language that drives strategic decisions
10:30 am Morning Break & Networking
Patient-Centred Metrics in Practice: From Data to Decisions
11:30 am Measuring Medical Affairs Impact in Rare Diseases: Moving Beyond Activity to Outcomes
- Shifting medical affairs teams from activity‑based reporting to impact‑driven measurement frameworks in the rare disease setting
- Building data and digital foundations that enable consistent measurement of patient engagement and medical strategy outcomes
- Lessons learned from applying impact‑focused metrics to evaluate whether medical affairs initiatives deliver meaningful results for patients, clinicians, and the organisation
12:00 pm How to Leverage Behavioural Science Methods to Quantify & Improve Patient Engagement
- Applying behavioural science frameworks to identify and measure key drivers of patient engagement, adherence, and clinical trial participation
- Quantifying the impact of trust, emotion, culture, and caregiver influence- translating behavioural insights into measurable engagement metrics across treatment pathways and clinical research
12:30 pm Lunch Break & Networking
1:30 pm Roundtable: Advancing Pre-Competitive Collaboration to Standardise Patient Engagement Metrics
- Driving industry-wide consensus on patient engagement benchmarks to enhance credibility and comparability
- Overcoming data-sharing, IP, and trust barriers to unlock collaborative learning and innovation
- Leveraging insights from leading consortia to adopt proven measurement standards and accelerate sector progress
2:00 pm From Insight to Impact: Harnessing the Patient Centricity Model for Engagement Value
- Novo Nordisk’s journey balancing system-led patient-experience to consumer-led patient experience data and evidence
- Integrating patient and consumer centricity into project strategies, evidence planning and advocacy
- Sharing case studies highlighting successes and challenges in capturing patient insights and translating them into actionable strategies
- Discussing best practices and collaborative approaches to scale patient engagement initiatives across different functions, driving organisational alignment and enhanced patient outcomes