Medical research participants need to reflect the diversity of communities across the United States to drive health care innovation that benefits everyone. However, medical research has historically underrepresented members of populations from diverse backgrounds or those with complex diseases. Consequently, we know less about the overall health, effective treatments, and disease prevention for these populations often left out of medical research, and as a result health care often uses a one-size-fits-all approach.
To fill this gap, the National Institutes of Health’s All of Us Research Program is working to enroll one million or more participants in a longitudinal research program and is prioritizing enrollment of members of communities historically underrepresented in medical research. All of Us is working to develop a robust dataset that researchers can use to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us.
Engaging Populations Underrepresented in Medical Research and Health Care Providers
Many populations underrepresented in medical research have a complex history of being stigmatized, mistreated, and ignored by the scientific community. Appropriately engaging members of these communities is critical to ensure that individuals make informed decisions about enrolling and remaining in All of Us. One strategy All of Us is using is to collaborate with trusted intermediaries, like health care providers and community-based organizations.
RTI International serves as one of the All of Us Engagement and Retention Innovator Awardees. In this role, RTI works with other consortium members and awardees to research, design, deliver, and evaluate digital solutions using a human-centered design and developmental evaluation approach. Human-centered design focuses on the needs of individuals and communities when developing solutions, while developmental evaluation prioritizes real-time data to inform ongoing decision making as part of the design process.
In Year 1, RTI conducted a landscape analysis and exploratory research to identify and understand:
- Disparities among populations underrepresented in medical research across the All of Us participant journey;
- Strategies used by All of Us to promote engagement, retention, and activity completion among members of these communities;
- Challenges, gaps, and unmet needs related to engaging health care providers and members of populations underrepresented in medical research;
- Strategies used by All of Us partners to engage health care providers and community members.
A Human-Centered Design and Developmental Evaluation Approach
In Year 2, RTI focused on co-creating digital solutions to support engagement with the All of Us Research Program. We conducted a total of 71 virtual co-creation workshops with a total of 416 individuals (health care providers and community members, including Black and African American, LGBTQ+, and Hispanic and Latino people) to validate challenges, brainstorm solutions, test, and refine 84 “idea cards” that depict digital solutions to address challenges engaging with All of Us.
A post-workshop evaluation showed that over 90% of workshop participants agreed or strongly agreed that the co-creation workshops made them feel more connected to All of Us. Following each workshop, RTI disseminated “Collaboration Updates” to workshop participants that summarized how their insights shaped RTI’s work, thanked them for their contributions, and provided avenues to maintain engagement with All of Us.
The ideas developed and validated in the workshops will be shared with consortium partners and prioritized for development. In the development phase, we will build prototypes, conduct user testing, and pilot test the prototypes in collaboration with consortium partners (Year 3).
