Analyzing data from and about patients is essential to advance biomedical research, but its collection and dissemination require significant investment of time and resources for patient organizations that choose to be the intermediary. Patient groups and their research collaborators must determine what data is needed and how to collect and manage it ethically and securely. They must also determine what can be shared and how to fund their efforts long term. In this session we'll hear from emerging nonprofit innovators about the opportunities and challenges they see as they position themselves as honest brokers for this most precious of research resources—our personal health data. 

Moderator

Jen Horonjeff

Founder and CEO, Savvy Cooperative

Speakers

Beth Dean

CEO, CURE Epilepsy

Kirk Nylen

Deputy Scientific Director, Ontario Brain Institute

Kapila Viges

CEO, MPN Research Foundation

Kate Wears

Executive Director, Myhre Syndrome Foundation