Building a Community of Trust in Epilepsy & Rare Syndromes

23 March 2023

Brad Chapman / FiercePharma

Author: Brad Chapman, Head of U.S. Epilepsy and Rare Disease Syndromes

My first meaningful experience with epilepsy was when I joined UCB nearly 16 years ago. I believe timing is everything. I spent my first 72 hours with the company, over a weekend, learning from the stories of people living with and caring for those with epilepsy. Before that time in my career, I had never had the opportunity to engage face to face with patients, nor had I ever even met someone living with the disease.

I began to learn about the diverse experiences and frankly, sometimes scary moments, that people living with epilepsy and their families face. It was also a humbling experience because I realized how little I knew about the day-to-day experience of those living with epilepsy and rare syndromes. As a leader, I know experiences form beliefs, beliefs drive actions, and actions produce results. This experience, and the experiences of others that weekend, was a grounding and formative experience for me, and why I am so passionate about advancing care and improving outcomes for those living with epilepsy and rare syndromes.

Over the last 16 years, I have progressively developed in my career in global roles and roles within the U.S., and I am now honored to have the responsibility as Head of U.S. Epilepsy and Rare Syndromes. Every day, I am still learning - because real impact and trust from the communities we serve comes from understanding their experiences and collective action.

Just like those first few hours, our organization focuses on listening to epilepsy and rare syndromes communities so we can understand the unmet needs, evolve, and do everything in our power to help. Throughout my first year in this role, I’ve taken these insights and experiences to build out a framework for our efforts moving forward – with patients and caregivers at the center. Three principles guide our efforts to build that community of trust:

Every Person Has Unique Experiences

Everything we do begins with generating a real understanding of the individuals we’re trying to help. Patients are unique people with their own lived experiences, needs, concerns, and preferences that go far beyond their condition.

And we also know – from speaking with and our engagements with patients – that they experience seizures and their effects in a wide range of ways, too. Some people have dozens of seizures each day, while others may have them once a year, have a rare epilepsy syndrome, or experience drug-resistant seizures. The impact of seizures can look different as well, from the physical presentation to the mood and behavioral impact. On top of that, social determinants of health – where people live, work, and age – alter experiences, as well as the care they receive.

We strive to create treatments and an ecosystem of solutions that thoroughly and thoughtfully address the unique needs of patients and are culturally relevant, so we can serve as a critical partner in care. And that’s why we’re making sure that we’re centering all of our work in learnings identified through our regular engagements with patient communities. Understanding any challenges helps us shape everything from our clinical development programs to our community support materials to be the most impactful for the patients we serve.

Emphasizing Elevated and Equitable Care

For anyone who works in healthcare today, it’s clear we’re at a crossroads when it comes to equitable care for all patients. Every aspect of the overarching health ecosystem – from how individuals access medications and health information to the development and investigation of those medicines – should be viewed through the lens of the individual patient’s needs and experiences.

I said before that experiences form beliefs and beliefs drive actions.  For instance, we know that the epilepsy experience in Black or Hispanic communities differs from the experiences of others; and limited access to specialized care in rural areas or in low-income communities can be a real factor in how a person lives with a neurological condition. These differences may complicate and lengthen diagnosis timelines and cause under- or mistreatment, further fueling health inequities. What we need is tangible action – and to lean in and understand the experiences and needs of individual communities. Similar to my formative experience 16 years ago, we have to listen to communities and ask questions like: “What are your individual experiences accessing care?” and “How can we do better?”

We’re working to address these gaps in a few ways:

These are just a few of our initiatives. We know it will take time and extensive partnerships to address the systemic problems related to health inequities, but we are committed to our role in uncovering and supporting these solutions.

Building a Sustainable Future

Trust is at the core of our relationships with the communities we serve, and that means we need to ensure that we’re able to partner with them consistently, reliably, and sustainably. Sustainability is ensuring that patients and caregivers know that we will be there when they need us. Working in service to the epilepsy and rare syndrome communities and striving for a sustainable future means we are focused on scientific innovation across the broad spectrum of disease while continuing to provide access to medicines and care. Whether that’s doubling down on our digital transformation so that we’re even more of a direct partner for healthcare providers or continuing to build on our tradition of turning conversations with patients into advocacy and innovation, our work is about building the kind of trust that sustains a healthcare relationship and allows it to organically meet the needs of all involved.

Looking Ahead

We know the proof that we’re living up to these pillars of trust is not in what we say, but in what we deliver. My pledge to the community, which was ingrained in that very first opportunity to engage with patients at UCB, is to listen to ensure that we understand the real experience of people living with epilepsy and rare syndromes such as Lennox-Gastaut Syndrome and Dravet Syndrome. And to act in a way that creates a meaningful and positive impact on the community so, together, we can create a sustainable future to best support all patients in need.



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