Patient Advocacy Voices
An Advocate's Journey to Put Patients at the Forefront of Research
Patient advocacy groups have become a powerful force engaging with clinical researchers. The National Bleeding Disorders Foundation (NBDF) has been one of the best at driving a research agenda that matters to patients, yet they still saw areas for improvement. Maria Santaella, Vice President of Research Strategy at NBDF, realized the importance of including patient voices at the very start of and throughout the research process. This is what it takes to ensure researchers understand the unmet needs and complications people live with every day. Learn how NBDF evolved from supporting researchers to ensuring that the lived experience of people affected by bleeding disorders is truly at the center of research. In this episode, Sanofi host Eric Racine and co-host Jane Smith discuss with Maria how to get to the next level of integrating patient voices and evidence into research.
Patient advocacy groups have become a powerful force engaging with clinical researchers. The National Bleeding Disorders Foundation (NBDF) has been one of the best at driving a research agenda that matters to patients, yet they still saw areas for improvement. Maria Santaella, Vice President of Research Strategy at NBDF, realized the importance of including patient voices at the very start of and throughout the research process. This is what it takes to ensure researchers understand the unmet needs and complications people live with every day. Learn how NBDF evolved from supporting researchers to ensuring that the lived experience of people affected by bleeding disorders is truly at the center of research. In this episode, Sanofi host Eric Racine and co-host Jane Smith discuss with Maria how to get to the next level of integrating patient voices and evidence into research.