Explore the Agenda
8:00 am Check-In & Coffee
8:50 am Chair’s Opening Remarks
Reporting the Right Metrics Across Stakeholders to Earn Trust, Influence Decisions & Accelerate Progress
9:00 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
9:30 am Systems Thinking: Making Patient Engagement Metrics Meaningful Across the Board
- Discussing current trends in regulatory approvals and with payers of giving more weight to the patient voice
- Outlining new types of evidence reflecting patient preferences
- Highlighting the need for a holistic approach to patient engagement across actors
10:00 am Fireside Chat: What Does the C-Suite Need to See to Champion Patient Engagement?
- Identifying engagement KPIs that influence C-suite decisions including time-to-market, recruitment efficiency, and portfolio value
- Discussing how to identify relevant KPIs that capture impact across drug discovery lifecycle and across differing therapy areas
- Navigating how perceptions of impact and value vary across functions
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 Moving Beyond Words to Build a Multi-Metric Framework That Embeds Patient Engagement into Drug Development
As more life sciences organisations formalise their patient engagement commitments, the real challenge lies in turning highlevel intentions into structured, measurable action. This interactive session, led by PFMD, combines hands-on exercises with insights from a global review of industry charters to help you build an engagement framework grounded in accountability and real-world impact.
You’ll work through diverse scenarios – across indications, modalities, and company scales – to design an adaptable, multi-metric model you can bring back to your team.
Key Takeaways:
- Identify fit-for-purpose metrics that reflect your organisation’s priorities and the needs of diverse patient communities
- Learn how industry leaders are embedding metrics into patient engagement charters to track progress and drive meaningful change
- Explore PFMD’s cross-sector efforts to standardise measurement and design frameworks that evolve with your organisation
- Develop a stakeholder-aligned strategy for communicating value, accountability, and success
- Leave with a practical, scalable template to support consistent measurement and improvement across the product lifecycle
By the end, you’ll have a flexible, actionable framework to bring back to your team – helping to standardise measurement and clearly demonstrate the impact of patient engagement across your projects.