Day Two

• Co-designing the dashboard by involving patients directly in shaping the digital tools and AI systems that measure their engagement, ensuring these platforms are intuitive, useful, and respectful of their time and energy
• Delivering the transparency dividend by giving patients direct access to their own engagement data, helping them see how their activity connects to personalized actions and building trust, motivation, and data accuracy
• Interpreting data with context by ensuring AI algorithms incorporate the patient’s voice to prevent harmful biases, recognizing that qualitative stories and feedback are essential for understanding quantitative engagement data and avoiding misreadings such as assuming low usage equals disengagement
• Establishing ethical guardrails as a foundation by involving patient advocates in creating the frameworks for data use, ensuring that measuring engagement is ethical, consensual, and aligned with patient approval

• Leveraging existing CRM and internal systems to capture patient interactions without reinventing workflows
• Streamlining metric collection across teams and departments for consistency and ease of use
• Identifying gaps and opportunities in current processes to enhance measurement while minimizing workload

• Best methods for partnering with ultra rare and larger rare patient organizations that maximize measurable outcomes and build-in evaluation components
• Collaboration on data collection from external patient advocacy initiatives without breaching compliance
• Supporting patient engagement efforts that maximize community impact while demonstrating value to your organization
• Understanding the value of building meaningful relationships with Patient Advocacy Organization that lead to successful outcomes for patients and your organization

• Mapping the end-to-end process for designing, testing, and operationalizing a measurable patient engagement framework
• Selecting and validating the KPIs that truly reflect patient impact across functions and the product lifecycle
• Securing cross-functional alignment by engaging leaders, overcoming resistance, and embedding continuous improvement

• Building KPI frameworks for patient-informed protocol development and identifying what “successful involvement” looks like
• Measuring the contribution of advocacy efforts to access and evidence outcomes, including influence on payer policies and restrictions
• Creating metrics to assess local engagement initiatives and translate national-level advocacy insights into community-level action

• Designing fit-for-purpose metrics when sample sizes are tiny and variability is high
• Capturing qualitative, relationship-based engagement in structured, defensible ways
• Building trust with rare communities while measuring burden, experience, and expectations
• Demonstrating impact to investors and internal leadership despite limited datasets

• Prioritizing high-value metrics that matter to leadership, partners, and regulators
• Embedding lightweight tracking into existing workflows to avoid measurement fatigue
• Leveraging outsourced partners, CROs, and patient groups to extend capacity
• Preparing early-stage measurement foundations that scale as the organization grows
• Tracking the long-term benefits of patient engagement to demonstrate value to the organization over time

Practical Session

Many companies commit publicly to patient engagement, but commitments alone aren’t enough. This hands-on workshop guides participants in transforming these commitments into practical, dynamic metrics that demonstrate progress, quality, and real-world impact. Through case examples, analysis insights, and collaborative exercises, participants will leave with tools to measure, track, and communicate the outcomes of their patient engagement activities.

What You'll Gain:

• An overview of common patient engagement commitments made by companies today
• Insights on translating commitments into measurable, dynamic reporting metrics
• A hands-on planning framework to implement metrics across functions for organization-wide reporting, accountability, and empowerment
• Practical tools and next steps to measure, celebrate, and communicate real-world patient engagement impact