Novo Nordisk has established a dedicated function to systematically incorporate patient voices across their value chain, transforming traditional drug development into a collaborative process with patients as partners. This strategic shift is anchored in Medical Affairs with the appointment of a Chief Patient Officer and the creation of a specialized team that has grown from five to almost 40 people in just two years.
"We want to transform drug development into patient collaboration," explained Claus Mark Nielsen, Patient Voice Engagement Lead at Novo Nordisk. "Collaboration is key with patients and patient organizations. We really want to ensure that we have an operating model where we can enhance innovation and collaborate with patients in all stages of the development process, the end users, to ensure that we develop a drug that is actually going to be used."
The company's approach involves implementing patient voice in strategic and operational documents and decision processes, ensuring that patient perspectives are anchored, implemented, and documented in every development project.
Patient Voice Strategy in Action
Nielsen shared a case study on amyloidosis cardiomyopathy (ATTR-CM), a rare heart disease with a life expectancy of three to five years after diagnosis. The team created a patient voice strategy that involved stakeholders from the earliest development phases through to later stages.
The process began with foundational patient insights gathered through ethnographic research, where social scientists spent time with patients in their homes to understand their lived experiences. This approach revealed a significant gap between the company's understanding and patients' actual experiences.
"We quite quickly learned there's a gap between our understanding and the patient's understanding about living with this disease," Nielsen noted.
This research has already impacted the clinical development program, influencing site selection, protocol design, recruitment materials, and considerations for drug administration.
Centralizing Patient Insights Through Digital Innovation
A key innovation in Novo Nordisk's approach is the Patient Voice Hub, a centralized digital platform that stores and organizes qualitative patient data and insights.
Agnete Bjerregaard Nielsen, Patient Insights and Intelligence Lead, explained: "The purpose of the Patient Voice Hub is going beyond just having the patient insights there, but actually having this place where we can ensure the data integrity and traceability of this qualitative patient data."
The Hub addresses several business challenges, including:
• Preventing duplication of patient engagement activities
• Providing a secure platform for storing and sharing patient data and insights
• Creating traceability for regulatory submissions
• Enabling feedback to patients about how their input influenced decisions
The development of this platform required a holistic approach that addressed data privacy, compliance, business processes, and data governance to ensure data integrity.
"Before going to the fancy stuff and adding AI or other tools, we need to have the foundation in place first," Bjerregaard Nielsen emphasized. "If it's just data that's out there and not really well handled, how can we know that we can trust it and put it into our regulatory submissions?"
Wide-Ranging Applications
The patient insights gathered through this framework inform multiple aspects of drug development and commercialization, including:
• Clinical trial design and feasibility
• Protocol development
• Recruitment and retention strategies
• Drug administration approaches
• Evidence generation for payers
• Launch materials and scientific communications
"There are many, many roles that could benefit from patient insights," said Bjerregaard Nielsen. "Imagine if you could in your role use patient insights to inform your specific tasks."
By integrating patient perspectives into core documents like target product profiles and product development plans, Novo Nordisk aims to ensure that patient needs are considered at every stage of development.
Five Key Takeaways:
1) Strategic integration of patient voice: "We want to include patient voice in strategic and operational documents and decision processes," ensuring patient perspectives are embedded throughout development.
2) Ethnographic research reveals critical insights: Sending social scientists to spend time with patients in their homes uncovers gaps between company perceptions and patient realities.
3) Centralized data management is essential: "We need to have this underpinning data foundation that can generate and disseminate our insights," with proper governance and privacy controls.
4) Patient insights inform multiple functions: From clinical trial design to marketing materials, diverse roles across the organization can leverage patient perspectives.
5) Closing the feedback loop with patients: The system enables Novo Nordis to tell patients, "Thank you for your contribution. Your knowledge actually resulted in X, Y, Z," demonstrating the impact of their involvement.
By systematically incorporating patient voices throughout the drug development process and creating a robust digital infrastructure to manage this data, Novo Nordisk is working to ensure that their products truly meet patient needs and improve health outcomes.
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