Limited Print and Electronic Distribution RightsThis document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions.The RAND Corporation is a research organization that develops solutions to public policy challenges to help make communities throughout the world safer and more secure, healthier and more prosperous. RAND is nonprofit, nonpartisan, and committed to the public interest.RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.Support RAND Make a tax-deductible charitable contribution at www.rand.org/giving/contribute www.rand.org For more information on this publication, visit www.rand.org/t/RR2578Published by the RAND Corporation, Santa Monica, Calif. © Copyright 2018 RAND CorporationR® is a registered trademark.iii PrefaceThe All of Us Research Program (AoURP), a key component of the Precision Medicine Initiative launched by President Barack Obama in January 2015, is an ambitious and innovative research initiative led by the National Institutes of Health (NIH) with a mission to "revolutionize how we improve health and treat disease."1 The AoURP is collecting survey data, electronic health records, physical measurements, and biospecimens to build a large and diverse data set for health research. The program's goal is to engage one million or more individuals living in the United States from diverse social, racial/ethnic, geographic, and economic backgrounds, as well as from all age groups over 18, regardless of health status. The expectation is that participants will remain involved with the AoURP for at least ten years, and perhaps even longer.In response to a request from AoURP leadership, RAND researchers conducted a mixedmethods study of participant and stakeholder engagement in the AoURP to define a set of best practices that all participating regional medical centers (RMCs) involved in engagement activities should consider adapting at their sites before the national AoURP launch in May 2018. Engagement in the AoURP comprises the tasks of making potential participants aware of the AoURP, enrolling them to participate, and retaining them within the program. To develop best practices, we used the Rapid Assessment Procedure, which enabled us to combine information from several data sources, verify emerging findings through triangulation, iterate between data collection and analysis activities, and inform relevant stakeholders of emerging findings in a timely manner.These findings should be of interest not only to RMC engagement leads and staff and AoURP leadership, but also to those ...
Limited Print and Electronic Distribution RightsThis document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions.The RAND Corporation is a research organization that develops solutions to public policy challenges to help make communities throughout the world safer and more secure, healthier and more prosperous. RAND is nonprofit, nonpartisan, and committed to the public interest. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.
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