Aurora Berra, Vice President Global Patient Officer
We are in an era of remarkable scientific advancement, allowing us to target diseases in ways previously unimaginable. New medicines and innovative treatment strategies are on the rise.
However, a paradox exists in modern healthcare: as science progresses, its complexities can make understanding it increasingly challenging. This underscores the importance of health literacy. Breakthroughs can only reach their full potential if those they aim to help comprehend their significance.
At Ipsen, we focus on areas with significant unmet needs, ensuring that patients awaiting meaningful advancements are prioritized. We have introduced the first-ever approved treatment for fibrodysplasia ossificans progressiva (FOP), enhanced options for primary biliary cholangitis (PBC), and are developing targeted treatments for pediatric low-grade glioma (pLGG).
For affected individuals and families, scientific progress is not an abstract notion; it represents new opportunities where previously few existed. With each advancement comes the obligation not just to realize scientific breakthroughs but to involve patients and communities in that journey.
Effective communication is often one of the most challenging aspects of this process. Health literacy is intricate, commonly interpreted as a patient’s ability to grasp complex information. However, we need to shift our focus: have we communicated the science effectively?
This shift is crucial as it places the onus on those of us who create and disseminate health information. Our mission transcends merely providing facts; we aim to ensure that the information is genuinely useful, enabling individuals to ask pertinent questions and make informed decisions about their care. This requires continual self-assessment, creativity, and transparency regarding both what is known and the uncertainties that may exist.
Clarity should begin at the initial phase, not only after scientific conclusions have been drawn. Patients and caregivers are often our best teachers. Our Patient Expert Review Panels ensure that our materials accurately represent the realities of living with specific conditions, challenging assumptions and identifying overlooked barriers.
Moreover, our Plain Language Review Panel adds another layer of insight, helping us pinpoint language and concepts that may not be as accessible as intended. We strive to integrate these insights across all our communications, from visual aids and plain-language summaries to open access to our published research. This is all part of our goal: to eliminate obstacles between scientific progress and the people it serves.
As science continues to evolve—especially in the fields we pursue at Ipsen—our communication strategies must also adapt. Innovation entails more than merely discovering possibilities; it includes ensuring that those possibilities are understandable and relevant to individuals. To me, this represents the essence of responsible innovation.
References
- Ipsen. Clinical data transparency. Our pledge: summaries in plain language for all journal publications. Link. Accessed 14 August 2026.
