Sharon Terry, Genetic Alliance: Data and power to the people
Ashoka Fellow Sharon Terry is improving health outcomes for patients who have genetic diseases by aligning incentives and structures so that they facilitate, rather than obstruct, the continuum of research, drug development, treatment, advocacy, and support.
“If I name a song, you can download it right now and have it in your ear a minute from now," she said. "If you need a cab or a ride, you can call it up on your phone. If you do want something to eat right now, it'll be at your door in 25 minutes. That we don't have that kind of convenience or attention to what we need in the health arena is crazy to me, and so my desire is to essentially really change the economic models and the business models for how things are done.”