Participant Engagement and Health Equity Workshop – July 1-2, 2015 – Day 1

On July 1-2, the Precision Medicine Initiative (PMI) Working Group of the Advisory Committee to the NIH Director (ACD) held a public workshop on participant engagement and health equity as they relate to the proposed PMI national research cohort. The workshop focused on the design of an inclusive cohort, building and sustaining public trust, direct-from-participant data provision, and effective and active participant engagement characteristics of a national research cohort of one million or more volunteers.The workshop built on the big science questions developed during the April 28–29 workshop at the NIH, digital health data perspectives shared during the May 28-29 workshop, and information on the strategies to address community engagement and health disparities in a large national research cohort gathered from stakeholders through a request for information. The workshop took place on the National Institutes of Health campus in Bethesda, Maryland, and was videocast.A full list of workshops being convened by the ACD PMI Working Group is available on the Events page of the NIH PMI website.Agenda and time codes: Welcome and PMI overview – Dr. Francis Collins – 00:01 Meeting overview – Ms. Bray Patrick-Lake – 29:30 Envisioning a Cohort that Is Participant-Driven, Inclusive, and Diverse – Dr. Tony Coles and Ms. Vernal Branch – 36:50 Public Perspectives about a PMI Cohort – Dr. Kathy Hudson – 1:08:05 Inclusion and Engagement Goals Related to Health Equity – Dr. Shiriki Kumanyika – 1:55:30 Challenges in Recruiting and Retaining Disadvantaged and Underrepresented Populations and Best Practices for Overcoming Them – Dr. Esteban Gonzalez Burchard – 2:54:35 Establishing Collaborative and Inclusive Governance in a Large Study – Dr. Spero Manson – 4:06:49 What Would a Direct-from-Participant Cohort Model Look Like? – Ms. Kathy Giusti – 5:34:15 Participant Perspectives on Data Sharing and Data Use – Dr. Sachin Kheterpal – 6:34:35 Wrap-up – Ms. Bray Patrick-Lake – 7:32:45