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Cultivating a patient-centered approach to epilepsy research

Posted by
Andrea Wilkinson, Global Patient Engagement, Global Epilepsy & Rare Syndromes


For more than three decades, we’ve been committed to people living with epilepsy and their families, providing a portfolio of innovative patient centered solutions for those in need. 

Any research and treatment development journey at UCB starts with identifying the patients’ unmet needs. Patients or people living with an epilepsy diagnosis, and their caregivers, are the true experts of their condition and it is their narratives that shape our scientific journey. 

So, before we go into any clinical trial, we make sure we have an in-depth understanding of the persons experience of living with the disease to better understand how a medicine is going to help the patients and their families. 

In the evolving landscape of epilepsy research, a profound shift is underway at UCB. We are delving even deeper into the multi-faceted experiences of people living with a range epilepsies and rare syndromes. We also aspire, in epilepsy, to bring disease modifying medications to improve patients’ lives with potential for curative therapies. 

We are looking beyond the seizures at the other co-morbidities that add to the burden of disease to explore the holistic impact of certain medications on the daily lives of people living with epilepsy. We recognize the uniqueness of each epilepsy journey, acknowledging that no two experiences are identical, and see this as a challenge that we will overcome together with the patient communities. 

Targeting the true unmet needs of those dealing with seizures can be challenging. For starters, there are different racial, ethnic, age groups, and socioeconomic backgrounds that need to be factored into the patient experience. As part of our research, we focus on areas of unmet need, in the hope to find inclusive representation of refractory patients and those living with rare syndromes. As we approach medicines in development and commercialization, we work to meet the needs of the varying, low-prevalence patient populations.

For instance, during our post-trial commercialization work, we secured insights from varying ethnic and socioeconomic backgrounds, including single and married caregivers to better understand logistical challenges of daily life. To bridge the gap even further, we collaborate with patient advocacy organizations to be as inclusive as possible. However, we acknowledge there’s a natural selection of advocates who have the bandwidth to engage with patient organizations; they tend to be in a higher socio-demographic bracket, which can bias our research. 

To combat this, we must check our own unconscious bias and diversify who and where we conduct our research. We are making a conscious effort to ensure these groups are not overlooked by bringing services and accessible information to hard-to-reach communities. A small step begins with ensuring the language we use is universally understood. Patient and caregiver facing materials that UCB produces for the patient and caregiver community need to be understood by an eight-year-old. We want to provide information to as many people as possible, regardless of their education, age, race, and socioeconomic background. 

It is imperative for patients and caregivers to influence every aspect of the development and post-market access of our new treatments. The patient's voice is changing the way medicines are being created and it's incredibly inspiring to witness and be part of this at UCB.

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