Patient Advocacy Panels

Biogen Engages Patient Communities with the Aim of Enhancing the Early Drug Development Process

  • Recognizes patient involvement as essential to changing R&D culture and practice
  • Helps embed patient and advocate perspective in R&D, which we hope will enhance our ability to develop and deliver potentially high-value treatments
  • Part of our commitment to be a leader in engaging patient communities

As part of our 40th anniversary celebration in 2018, we hosted advocacy roundtables in the U.S. and Europe to help us better understand ways we could increase and improve our engagement with patient communities with the aim of ensuring the patient perspective is captured across the drug discovery continuum.

For the past few decades, patient organizations have significantly shaped regulatory health authorities’ expectations around the importance of the patient perspective in early research and development. Regulatory leaders at the U.S. Food and Drug Administration (FDA) and European Medicines Agency (EMA) are actively engaged in externally led patient-focused drug development meetings, making the patient perspective a strategic priority and a critical part of the drug approval process.

We also recognize that the patient perspective is a key driver in our future success – which we believe will enhance our ability to develop and deliver potentially high-value treatments to patients with unmet needs. Through our dialogue with patient advocacy organizations at these roundtables, we were able to gather feedback and insights to help us co-create ideas for further embedding the patient-perspective in the drug development process.

“To me, the story of spinal muscular atrophy is the combination of amazing science and technology combined with a cohesive, collaborative community prepared to take advantage of that science,” said roundtable participant Kenneth Hobby of CureSMA. “Biogen coming in very early, talking about its plans, being open and honest with the community and helping prepare us for what was coming is very important. You established yourselves as true partners.”

Roundtable participants believe we have an opportunity to take a leadership position engaging patients as partners due to our nimble size, competitive nature and focus on neurological and neurodegenerative diseases.

“The relationship needs to be seen as an equal partnership, recognizing that you need them as much as they need you. You get the drugs approved that can then help improve patients’ lives,” concurred Alison Evans with Alzheimer’s Research UK.

We have already made efforts to turn these lively and insightful discussions into concrete actions. One critical way is to prioritize top-down commitment to early, ongoing patient involvement as essential to changing culture and practice within the organization. These include consistently and systematically engaging and integrating patient perspectives across each therapeutic area and within clinical programs. It also includes utilizing existing frameworks, tools and resources to help speed adoption and process change.

“We recognize we need to be bigger risk-takers in transforming our internal community at Biogen to be more responsive externally, to keep the dialogue moving forward, to show up differently, to be consistent and transparent and to make a real difference,” stated Jessica Riviere, Senior Director for Global Patient Advocacy.

By engaging and communicating early and often, we hope to continue the momentum of these roundtables to help us be more strategic about the way we work with advocacy organizations to understand the perspectives of patients at all stages of drug development.