Dinner event focuses on person-generated health data

On May 2, 2017, the Duke-Margolis Center for Health Policy partnered with PatientsLikeMe and Arc Fusion to convene a unique and provocative dinner program entitled, “Person-Generated Health Data: Evidence by the People, for the People.” Dr. Mark McClellan introduced the evening with Sally Okun from PatientsLikeMe and also served on a panel with Anna McCollister-Slipp and Tara Montgomery that was moderated by Susan Dentzer, Duke-Margolis advisory board member and President and CEO of the Network for Excellence in Health Innovation. Dr. Gregory Daniel led a break out group where all the participants were asked to consider how person-generated health data could contribute to the central question of the evening: “What is health evidence in the networked and connected 21st century?” These discussions are critical to the continued progress and advancement of capturing the patient voice and experience to inform both development and regulation of drugs and medical devices. Significant challenges remain in translating this information in into reliable data and evidence, and this event is envisioned as the beginning of a series of projects focused on identifying and addressing critical next steps to leverage person-generated health data as a credible source of real-world evidence for regulatory decision-making.