An Equity-Centered Stakeholder Feedback Model Informed by the Return of DNA Results to a Diverse Research Cohort

Wednesday, July 19, 2023: 8:00 AM-9:30 AM
Grand Hall East - A/B (Hyatt Regency Downtown Atlanta)
Discover how the All of Us Research Program gathered, assessed, and integrated feedback from multiple stakeholder groups, including our research participants, to ensure a participant-first, equity-centered health communications campaign and responsible return of health-related DNA results to a diverse cohort of participants. All of Us seeks to speed up health discoveries by building one of the largest, most diverse, longitudinal health datasets of its kind. To do this, the program is asking at least one million people who reflect the diversity of the United States to enroll and share their health information for at least 10 years. If participants share a blood or saliva sample, they can choose to receive free, personalized DNA results from All of Us. In this panel session, attendees will gain practical insights on how to integrate stakeholders into communications and user experience planning and implementation. Presenters will discuss the processes, methods, and lessons learned from engaging with our stakeholders to create a participant-first, equity-centered framework for health communications and user experience professionals that prioritizes: (1) Building trust in light of historical discrimination and unethical research practices, (2) participant choice, (3) participant privacy and data security, (4) plain language, (5) health literacy, (6) inclusivity and cultural competency in materials, and (7) usability and accessibility of technology. We look forward to sharing our experiences and lessons learned from collaborating with our participants, community partners, and other stakeholders from groups underrepresented in health research to guide the responsible return of health-related DNA results to our participants.

About the All of Us Research Program and the Return of Health-Related DNA Results: A Health Communications Perspective
Ryan Hollm, MPH, National Institutes of Health, All of Us Research Program; Edgar Gil Rico, BS, MS, National Alliance for Hispanic Health; Briana Lang, BS, MA, Wondros; Kimberly Morrison, MPH, National Institutes of Health; Siya Qi, BA, MS, Asian Health Coalition; Jennifer Shelley, MMC, MS, NIH All of Us Research Program

Creating Equity-Centered Health Communications Requires Diverse Input: How the All of Us Research Program Created a Model to Gather, Analyze, and Apply Stakeholder Feedback
Jennifer Shelley, MMC, MS, NIH All of Us Research Program; Edgar Gil Rico, BS, MS, National Alliance for Hispanic Health; Ryan Hollm, MPH, National Institutes of Health, All of Us Research Program; Briana Lang, BS, MA, Wondros; Kimberly Morrison, MPH, National Institutes of Health; Siya Qi, BA, MS, Asian Health Coalition

A Deeper Dive into a Stakeholder Feedback Model to Increase Health Equity and Inclusion in the Return of DNA Information to Research Participants
Siya Qi, BA, MS, Asian Health Coalition; Edgar Gil Rico, BS, MS, National Alliance for Hispanic Health; Ryan Hollm, MPH, National Institutes of Health, All of Us Research Program; Briana Lang, BS, MA, Wondros; Kimberly Morrison, MPH, National Institutes of Health; Jennifer Shelley, MMC, MS, NIH All of Us Research Program

Assets in Action: A Partner Perspective on Using and Adapting Stakeholder Informed Materials
Bryan Castro, MPH, National Alliance for Hispanic Health; Edgar Gil Rico, BS, MS, National Alliance for Hispanic Health; Ryan Hollm, MPH, National Institutes of Health, All of Us Research Program; Briana Lang, BS, MA, Wondros; Kimberly Morrison, MPH, National Institutes of Health; Siya Qi, BA, MS, Asian Health Coalition; Jennifer Shelley, MMC, MS, NIH All of Us Research Program

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