Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem

Area of Science:

• Biopharmaceutical Industry
• Patient Engagement
• Healthcare Management

Background:

• Patient-centricity is often narrowly defined and underutilized in the biopharmaceutical industry, typically serving to validate existing assumptions rather than drive decisions.
• Existing patient engagement methods rarely lead to deep understanding or influence business strategies.
• A gap exists in truly integrating patient and caregiver lived experiences into biopharmaceutical decision-making.

Purpose of the Study:

• To describe an innovative partnership model between a biopharmaceutical company and patients to foster deep understanding and co-authorship of strategies.
• To introduce and explain the STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) platforms.
• To demonstrate how these platforms drive patient-centric decision-making and enhance the patient journey.

Main Methods:

• Development of two interconnected organizational design platforms: STAR and LEAP Immersive Simulations.
• STAR platform for generating global patient insights integrated into drug candidate and product strategies.
• LEAP Immersive Simulations for country-level insights, empathetic understanding, and support for medicine launches.

Main Results:

• Creation of patient-centricity frameworks (STAR and LEAP) requiring significant organizational shifts.
• Generation of integrated, cross-functional insights for patient-centric decision-making.
• Empowerment of patients to dictate needs and validate solutions, moving beyond traditional engagement surveys.

Conclusions:

• The described partnership model represents a paradigm shift, moving from patient engagement to patient co-authorship of biopharmaceutical strategies.
• STAR and LEAP platforms facilitate a deeper understanding of the stakeholder ecosystem and individual patient experiences.
• This approach leads to an aligned patient journey, 360° stakeholder activation, and impactful solutions co-created with patients.