A Data-Driven Approach to Addressing Challenges in Specialty Pharma
Medication adherence remains one of the most pressing challenges in rare and orphan disease care. Despite the availability of life-changing therapies, real-world data consistently shows that many patients struggle to stay on treatment—whether due to side effects, regimen complexity, financial barriers, or psychological factors. This is not just a matter of missed doses; non-adherence directly impacts health outcomes, increases disease burden, and diminishes the potential of innovative specialty treatments.
This series, based on a comprehensive analysis of U.S. pharmacy claims from 2019–2024, goes beyond traditional adherence metrics to explore the real-world behaviors and decision-making processes that shape long-term persistence. By moving beyond refill tracking to dose-level insights, we uncover the early warning signs of therapy discontinuation and the most effective interventions to keep patients engaged.
What You’ll Find in This Series
This four-part series provides a holistic examination of adherence in rare disease specialty therapies, breaking down key challenges, behavioral patterns, and targeted solutions:
- Part 1: High-Risk Segments and Barriers – Identifies patient groups most at risk for therapy non-persistence and the primary reasons behind non-adherence, from cost burdens to regimen fatigue.
- Part 2: Condition-Specific Adherence Challenges – Analyzes adherence trends across different rare disease categories, including oncology, neurological disorders, metabolic conditions, and autoimmune diseases.
- Part 3: Understanding the Full Patient Journey – Explores the limitations of traditional adherence metrics and the advantages of tracking real-time dose-level behaviors for earlier, more effective interventions.
- Part 4: Behavioral & Refill Patterns Indicating Risk – Examines how patient behaviors—such as late refills, dose-skipping, and self-rationing—can predict therapy discontinuation and guide proactive engagement strategies.
Why This Matters
The rare disease community faces unique adherence hurdles that require more than one-size-fits-all solutions. Understanding why patients struggle with adherence is just as critical as identifying who is at risk. By leveraging real-world data and behavioral insights, we can shift from reactive problem-solving to proactive, patient-centered support.
At KEEP, we believe that adherence is not just about prescriptions—it’s about empowering patients with the right tools, education, and real-time support to sustain their treatment journey. This series serves as a blueprint for designing smarter, more personalized adherence strategies that improve both patient outcomes and the overall impact of specialty therapies.
