RAND researchers identified best practices for engaging participants in the All of Us Research Program. The program's goal is to collect long-term survey data, electronic health records, physical measurements, and biospecimens from 1 million U.S. adults to build a diverse data set for health research. Engagement entails making potential participants aware of the program, enrolling them, and retaining them as participants for at least ten years.
Best Practices for Participant and Stakeholder Engagement in the All of Us Research Program
Download eBook for Free
| Format | File Size | Notes |
|---|---|---|
| PDF file | 0.7 MB | Use Adobe Acrobat Reader version 10 or higher for the best experience. |
Research Question
- What are the best practices for making potential participants aware of the AoURP, enrolling them to participate, and retaining them within the program?
RAND researchers identified best practices for making potential participants aware of the All of Us Research Program (AoURP), enrolling them to participate, and retaining them within the program. The program's goal is to collect long-term survey data, electronic health records, physical measurements, and biospecimens from 1 million U.S. adults to build a diverse data set for health research. The AoURP is an ambitious and innovative research initiative led by the National Institutes of Health with a mission to "revolutionize how we improve health and treat disease." The expectation is that participants will remain involved with the AoURP for at least ten years. The AoURP is a key component of the Precision Medicine Initiative launched by President Barack Obama in January 2015. Precision medicine focuses on prevention and treatment strategies that take individual variability in genes, environment, and lifestyle into account.
Making potential participants aware of the program, enrolling them, and retaining them over a long period of time will require support from community leaders and clinical champions, as well as diverse engagement teams. Some potential participants are likely to be wary of such a bold national program. Therefore, critical first steps for participant and stakeholder engagement are to explain the program's goals and potential benefits in ways that participants can understand and to nurture an environment of trust with communities, as well as across and within regional medical centers. Because many important aspects of the AoURP are uncertain, engagement staff must know how to talk about these uncertainties.
Key Findings
The authors identified six best practices for engagement:
- Expand existing community partnerships to build awareness of precision medicine and prepare community members for considering enrollment in the AoURP.
- Foster a spectrum of leadership support to identify well-placed allies who can help with participant engagement.
- Engage a mix of study champions by involving physicians, other clinical personnel, community members, and enrolled participants.
- Make precision medicine relevant to participant and community priorities by tailoring and personalizing messages about the AoURP.
- Build an engagement team with diverse expertise by hiring staff with marketing, customer care, or public relations experience who also understand community priorities and know the clinical sites where recruitment takes place.
- Be prepared to talk about uncertainties related to the evolving nature of the AoURP.
The authors developed the three Ms of engagement framework for evaluating participant engagement process and its outcomes:
- This framework distinguishes between metrics, markers, and mechanisms of engagement.
- Metrics are counts and descriptions of what was done to engage participants.
- Markers are the outcomes or benefits that engagement in the AoURP may bring.
- Mechanisms are hypotheses that link metrics and markers and try to explain how engagement activities yielded the desired outcomes.
Recommendations
Implement best practices for engagement
- Expand existing community partnerships.
- Foster a spectrum of leadership support.
- Engage a mix of study champions.
- Make precision medicine relevant to participant and community priorities.
- Build an engagement team with diverse expertise.
- Be prepared to talk about uncertainties.
Evaluate engagement success using the three Ms of engagement framework
- Define desired outcomes, including increased participants' trust in research, science, academic/research institutions; improved public perception of research; positive changes in health equity in the conduct of research; increased scientific literacy; increased awareness of precision medicine; and narrowing of the digital divide.
- Measure what was done to engage.
- Identify and test hypotheses about how a given engagement strategy may lead to desired outcomes.
Incorporate retention strategies commonly used in longitudinal studies
- Minimize the perceived burden of follow-up requests.
- Proactively manage the samples for future projects.
- Develop a strategy for keeping participants' contact information current.
- Build relationships and stress the longitudinal nature of the project to encourage retention.
- Maintain regular contact with participants to minimize attrition.
- Tailor and personalize messages.
Table of Contents
Chapter One
Introduction
Chapter Two
Defining Best Practices and Outcomes of Engagement
Chapter Three
Laying the Foundation
Chapter Four
Leading by Example
Chapter Five
Capitalizing on Health Care Infrastructure
Chapter Six
Tailoring and Personalizing Communication
Chapter Seven
Building and Nurturing Engagement Teams
Chapter Eight
Dealing with Uncertainty
Chapter Nine
Markers of Engagement Success
Chapter Ten
Three Key Recommendations for Participant and Stakeholder Engagement
Appendix
Research Methods
This research was conducted by RAND Health.
This report is part of the RAND Corporation Research report series. RAND reports present research findings and objective analysis that address the challenges facing the public and private sectors. All RAND reports undergo rigorous peer review to ensure high standards for research quality and objectivity.
This 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; linking directly to this product page is encouraged. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial purposes. For information on reprint and reuse permissions, please visit www.rand.org/pubs/permissions.
The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.