Rare Disease Pharma Maps Rare Cholestatic Liver Disease Journey for Targeted Patient Engagement

Client Challenge

A global pharmaceutical company sought to analyze the patient journey in a rare cholestatic liver disease. They wanted to gain a deep understanding of the steps, stakeholders, unmet needs, pain points, and behavioral archetypes of patients with this rare disease across different geographies.

With a comprehensive understanding of the rare cholestatic liver disease patient journey, the client aimed to develop patient-centric, real-world product strategies. The client also intended to strengthen interactions with healthcare providers and align internal strategies with patients’ perspectives, focusing on a patient-centric treatment value proposition.

The client looked for a vendor that offered a data-driven, multi-country approach to understanding patient experiences and provided insights into patient emotions, behaviors, and country-specific differences. They also required that the vendor deliver structured behavioral segmentation to refine engagement strategies.

The client selected Alira Health based on the company’s expertise in rare diseases and patient journey analysis and the strong methodological approach integrating primary and secondary research.

Our Approach

Alira Health’s Patient Engagement team proposed a multi-country patient journey analysis to map patient experiences, identify unmet needs, and develop behavioral segmentation for targeted strategies. Evidence-based insights resulted from a combination of primary research through 14 in-depth patient interviews and two patient advisory boards of five patients each and secondary research into existing literature.

The team developed a patient-centric value proposition for the client’s product in rare cholestatic liver disease, integrating patient insights by aligning their perspectives on unmet needs with their views on the most impactful clinical benefits of treatment (assessed blindly, without disclosing the treatment to patients).

To execute on this proposed strategy, the Patient Engagement team conducted the following activities:

• Conducted secondary research on the rare cholestatic liver disease to establish a foundation for the project, including disease insights, therapeutic options, and patient organization mapping.
• Held 14 in-depth interviews across the United States, Germany, France, and Italy to analyze emotions, pain points, and unmet needs, as well as the overall patient journey, while testing the features of the product’s (blind) target product profile from a patient perspective.
• Evaluated key similarities and differences across different geographies to identify common unmet needs and best clinical practices.
• Developed behavioral segments based on patients’ acceptance of the disease and attitudes toward physicians.
• Developed the product’s patient-centric value proposition with compelling key messages tailored for the target, ensuring clear communication of benefits that resonate with the target audience.

Outcomes

Alira Health provided the client with a comprehensive map of the rare cholestatic liver disease patient journey, including detailed country-specific and global insights, as well as clear unmet needs and pain points. Alira Health also delivered a behavioral segmentation framework to guide patient engagement and marketing strategies and a patient-centric value proposition for the product to align internal stakeholders on patient perspectives.

Through this project, the client gained a deeper understanding of patients living with a rare cholestatic liver disease, enabling a business case for senior management to develop patient support initiatives aligned with real-world patient experiences. The client also increased their clarity on the strategic direction for patient advocacy and physician engagement.

Key Success Factors

Key success factors in this project included Alira Health’s profound understanding of patients’ perspectives and their true unmet needs, coupled with extensive connections with patient organizations and key opinion leaders.

Alira Health has a strong track record in rare disease projects across various conditions, with expertise in reducing risk and accelerating clinical development and commercialization for both pediatric and adult indications. Additionally, Alira Health’s ability to recruit in the rare disease space across geographies ensured comprehensive and diverse patient representation, further strengthening the project’s impact and insights.

Alira Health’s strategic approach and mindset enabled them to link patients’ unmet needs to product clinical benefits, effectively informing and shaping the client’s marketing and commercial strategies. Their patient-centric methodology enabled a deep understanding of the disease impact, stakeholder interactions, and pain points.

Learn more about our full lifecycle of rare disease services.