Precision Medicine Initiative: Building a Large U.S. Research Cohort — Presentation Slides

Day 1: Patient/Participant Centered

Vision for the Cohort and the Precision Medicine Initiative* — Francis Collins

Reports from Workshop Planning Teams — Moderated by Rick Lifton

• Building a consortium of cohorts: cohort identification and participant recruitment — Chaired by Mike Lauer & Eric Boerwinkle
• Participant engagement, data privacy, and novel ways of returning information to participants — Chaired by Laura Lyman Rodriguez & Pearl O’Rourke
• Data collection and mobile technologies — Chaired by Roderic Pettigrew & Kevin Patrick
• Opportunities and challenges related to the use of electronic health records data for research — Chaired by Daniel Masys & Rex Chisholm

Creation of a Large U.S. Research Cohort — Moderated by Teri Manolio

• Report of NIH Cohort Inventory Findings — Dave Kaufman
• The Million Veteran Program Cohort: An Example of a Large-Scale Health System-Based Cohort* — Michael Gaziano
• Building a Consortium of Cohorts* — Eric Boerwinkle

Participants as Partners — Moderated by Pearl O’Rourke

• Fair Information Practices: Building Trust with Consumers* — Dixie Baker
• New Ways of Engaging Research Participants and Novel Consent Models* — Sharon Terry
• Participant Perspectives on Data Sharing: What is Important and Why* — Andrea Downing

DAY 2: Informatics/Data Centered

mHealth Technologies* — Moderated by Bill Riley

• How Americans Use Technology to Track and Understand Their Health* — Peter Tippett
• Choosing Wisely: What Should be Measured in a Cohort this Large?* — Kevin Patrick
• Testing the Devices: Using the Cohort to Assess Efficacy* — Santosh Kumar

Informatics Requirements and Electronic Health Records (EHRs)* — Moderated by Daniel Masys

• Motivations to Participate* — Rex Chisholm
• Technical Issues in Aggregating and Analyzing Data from Heterogeneous EHR Systems — Josh Denny
• Enhancing “Blue Button” functionality for Research — Doug Fridsma

Data Access for Researchers: Guiding Principles for Data Access and Sharing — Moderated by Phil Bourne

• Data Access: Who Can Access the Data and How?* — Rory Collins
• What Protections are Needed* — David Ledbetter

Workshop Action Items* — Francis Collins

* Presentation does not yet meet the requirements of Section 508 of the Rehabilitation Act, though it will shortly. Please contact us via our Ask NIH online form if you have accessibility issues involving the document.