On January 30, 2015, President Obama unveiled details about the Precision Medicine Initiative, a new research effort intended to revolutionize how we improve health and treat disease. Several CTTI affiliates were invited to take part in the announcement. After an afternoon in the White House, the synergy between this federal initiative and CTTI’s work was clear.

CTTI co-chair Dr. Robert Califf found the event to be a call-to-action for CTTI to redouble efforts to streamline clinical trials, so that accelerated technology development can lead to practice based on high quality evidence. Furthermore, CTTI’s pioneering work in patient engagement is consonant with the proposed new model of patient-powered research to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Following the presidential announcement, 30 leaders from the patient community joined NIH Director Francis Collins for lunch to explore their hopes and fears about the effort. CTTI’s director of stakeholder engagement, Bray Patrick-Lake, was in attendance and reports that members of the patient community spoke to their great hopes in the science and commitment of NIH and the White House. These sentiments were perhaps best stated by 11-year-old rare disease patient Beatrice Rienhoff who said it was the best day of her life; however other patients articulated that fears remain around the IRB and informed consent impediments in the current research system. This makes CTTI’s work on these topics and others even more timely, relevant and urgent.