One of those attending the recent White House gathering where Obama announced the Precision Medicine Initiative was a woman who has worked tirelessly as a patient advocate for over twenty years. She’s an award winning scientist and the CEO of the Genetic Alliance: Sharon Terry joins us to kick off a new series, Personalized Medicine and the Consumerization of Healthcare.
Sharon was advocating for the sharing of patient data long before it became fashionable. Recently chairing the Institute of Medicine’s workshop and consensus study on data sharing and clinical trials, Sharon says that there has been a shift on the topic and that we are finally saying how do we share, not do we share.
“My desire is that we consumers—patients, participants, public—whatever word you want to use—that we understand how much power we have to shift the paradigm. Other industries have shifted—music, publishing, banking—because consumers demanded certain things,” she says in today’s interview. "I think we may have to be in the same position in health and medicine. It may have to come from us more than anywhere else. And then economies will be built around that sharing that right now don’t exist."