Fifteen years ago, at the age of 42, Israel Robledo was diagnosed with Parkinson’s disease. He spent months coming to terms with his diagnosis and realized being a victim didn’t suit him. Robledo, who is Hispanic, is one of 18 members from underrepresented communities offering their experience to biotechnology company Biogen.
Community feedback
The Community Advisory Board (CAB) was established to serve as a bridge between Biogen and communities that have a lack of education, awareness, and access to clinical trials.
“Pharmaceutical companies don’t have the best reputation,” Robledo observes. “But Biogen is building trust. They realize people of different races and ethnicities react differently to medical issues and to clinical trials.”
The Board was set up in partnership with the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit dedicated to educating patients and the public on clinical research participation.
“Working alongside a diverse Community Advisory Board allows researchers at Biogen to listen and learn in real time,” explains Kate Wilson, Biogen’s Head of Health Equity on the Patient Engagement, Equity and Transparency team.
Clear messaging
The CAB has provided hundreds of points of feedback on sharing information to patients, ranging from trial descriptions to travel logistics to whether a person needs to reveal their immigration status – that information is not collected in Biogen clinical trials, something that is now addressed in its assets.
According to Robledo, the final products are “pretty darn good. I take pride in saying these materials are something that we came up with. Providing a voice is why I became a patient advocate.”
Looking to the future
The CAB and Biogen’s diversity, equity and inclusion work is garnering industry attention, winning the 2021 Global Pharma Patient Champion Award. The end goal: develop medicines that are safe and effective for all.