Patient engagement benchmarking and strategy
Challenge
A rare-disease–focused biopharma company aimed to enhance patient engagement and advocacy across neurological and mitochondrial diseases.
The client needed to:
Assess performance against industry best practices
Identify gaps and opportunities beyond compliance
Create a consistent, transparent patient engagement narrative
The client sought DKI Health’s support in creating a new patient engagement function, establishing best practices, defining performance metrics, engaging with patient organizations, and tracking progress.
Our Solution
Led as a subject matter expert and strategic advisor:
Established a dedicated patient engagement function with cross-functional integration, informed by benchmarking against five dimensions—Vision & Mission, Organizational Structure, Patient Relationships, Advocacy Priorities, and Transparency.
Created corporate policies for epilepsy and mitochondrial diseases, SOPs, and governance for patient engagement, plus a patient/caregiver website, tailored FAQs, and compliance guidance.
Led best practices review and gap analysis; recommended centralized resources, formal governance, and ROI tracking.
Supported patient-driven thought leadership and storytelling to strengthen trust with rare disease communities.
Profiled leading patient advocacy groups, mapping priorities and unmet needs to guide partnerships.
Produced the client’s first Patient Engagement Annual Report covering research, education, community support, policy, and charitable giving, with case studies and transparent metrics.
Benefits to the Client
Provided strategic clarity and differentiation, as benchmarked against industry peers, to set new standards for patient engagement in rare diseases.
Established credibility and trust with patient communities through transparent reporting.
Demonstrated increased ROI over time, measured against benchmarked KPIs, aligned to the client’s business goals.
