The research that informs our health care often uses a one-size-fits-all approach and has historically underrepresented populations with diverse backgrounds or those with complex diseases. Consequently, we know less about the overall health, effective treatments, and disease prevention for these underrepresented populations. Research needs to reflect the diversity of communities across the United States to drive innovation in health care that benefits everyone.
To fill this gap, the National Institutes of Health All of Us Research Program is working to enroll one million or more participants in a longitudinal research cohort and is engaging members of populations from communities underrepresented in biomedical research. All of Us is working to develop a robust data set that researchers can use to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us.
Engagement with Underrepresented Populations and Health Care Providers
The challenge is that historical abuses make it difficult to engage with many underrepresented populations. Engaging with and listening to these communities are critical activities to ensure that their members make an informed decision about enrolling and remaining in the All of Us Research Program. One strategy All of Us is using to engage with underrepresented populations is to collaborate with trusted intermediaries, like health care providers and community-based organizations.
RTI serves as one of the All of Us Engagement and Retention Innovator awardees. In this role, RTI is working with other consortium members and awardees to research, design, deliver, and evaluate multicultural, experiential digital engagement experiences using a human-centered design and developmental evaluation approach. These digital experiences will support ongoing, impactful engagement for health care providers with the program, health care providers’ engagement with patients and community members about the program and engagement of participants from underrepresented groups across their journey with All of Us.
The work RTI conducted in Year 1 included landscape analysis and exploratory research to identify and understand:
- Disparities between underrepresented populations compared with populations historically represented in biomedical research across the All of Us participant journey (outreach, enrollment, and activity completion).
- Strategies currently being used by All of Us to promote engagement, retention, and activity completion among members of underrepresented populations with the program.
- Barriers, challenges, gaps, and unmet needs related to engaging health care providers and members of underrepresented populations with All of Us.
- Strategies currently being used by All of Us to engage health care providers with the program and to support their engagement with patients and community members about the program.
A Human-Centered Design and Developmental Evaluation Approach
In Year 2, RTI is specifically focused on co-creation (designing solutions with users for users) and user testing. Co-creation engages key stakeholders (i.e., both members of underrepresented populations and health care providers) throughout the entire design, delivery, and evaluation process. An inclusive design approach will harness diversity of thought, help solve problems in new ways, and promote uptake of innovative products. Further, the involvement of key stakeholders through co-creation increases the likelihood that the end products are more appealing and engaging to underrepresented populations and health care providers.
The short-term goal of using a human-centered design and developmental evaluation approach is to increase transparency and trust about the research process and to facilitate rapid, iterative feedback that nurtures learning, adaptability, and evidence-based perspectives. The long-term goal is to create meaningful digital engagement experiences that foster authentic and sustained engagement with All of Us. This is important because engagement is the foundation by which the program enables researchers to drive health care advancements across all communities.
