Learning To Listen: Voice Of The Patient Grows Louder In Product Development

By Katharine Chorlton

Days before Christmas 2017, a nationwide call went out requesting nominations of patients and caregivers to join a new public/private-sponsored Patient Engagement Collaborative.

Among the promised duties for this yet-to-be-filled body of 16 patient community representatives: Propose new collaboration models in which patients and patient advocates are partners in healthcare product development and U.S. Food and Drug Administration product reviews.

The collaborative’s creation, a little more than a year after the 21st Century Cures Act became law in the United States, is the latest step in an accelerating patient-centered drug and device development movement. This worldwide effort is being fueled by ever-improving consumer-controlled social and health data technology, advancements in personal genetic understanding, and increased healthcare cost-sharing in some quarters. Patient-driven changes are systematically beginning to inject more than token patient participation and viewpoints into all stages of drug and device development and slowly, but methodically, chipping away at the clinically isolated way drugs and medical devices are developed.