Equity-Centered Communication Design and Implementation: Overview and Results from Co-Creation Workshops to Inform Digital Engagement Solutions for the All of Us Research Program

Theoretical Background and research questions/hypothesis: The All of Us Research Program is a national initiative to inform precision medicine by engaging participants from diverse backgrounds such as African Americans, Hispanic or Latino, and LGBTQIA+ community members. It is critical for members of these populations to be represented in the All of Us Research Program to ensure that advances in precision medicine do not exacerbate health disparities experienced by these populations. Understanding the unique needs and preferences of these populations is imperative for ensuring that All of Us engagement approaches are inclusive to support participant enrollment and retention. The purpose of our study was to conduct a two-part series of co-creation workshops with African American, Hispanic or Latino, and LGBTQIA+ community members to inform the development of culturally relevant digital engagement solutions for All of Us. Our primary research question was, “What are the research engagement needs and preferences of African American, Hispanic or Latino, and LGBTQIA+ community members?”

Methods: We conducted a total of 52 virtual workshops (24 Workshop 1 groups and 28 Workshop 2 groups). In Workshop 1, participants were asked to discuss their motivations for enrolling in research programs like All of Us and barriers they experience in participating in research programs. The co-creation process for workshop 1 involved participants 1) reviewing and discussing barriers to research participation, 2) choosing a challenge to focus on and brainstorm solutions to address the challenge, and 3) doing individual presentations to share their solutions. Workshop 1 participants offered a collective total of 32 unique solutions for overcoming barriers to research participation. Findings from Workshop 1 informed the development of digital engagement solutions (idea cards with descriptive text and visual storyboards) that were reviewed and rated in Workshop 2. As part of workshop 2 (concept testing), participants were asked to provide their opinions and feedback about the idea cards, including their perceptions about acceptability, feasibility, and appropriateness. We also gathered participants’ input about suggested changes for making the idea relevant for their community, perceived benefits of the idea to their community, and suggestions for implementing the concept, including proposed settings for delivering the concept.

Results: Barriers to participation in a study like All of Us included lack of awareness, lack of culturally appropriate materials, concern about personal data security and privacy, distrust of research, and unclear value/benefit of participation. The highest rated concepts to increase engagement with All of Us across the three community groups included point of care videos (mean rating 4.19 out of 5), text message chat bot (4.14), podcast/radio partnerships (3.99), and online decision support tool (3.99). Post-workshop survey results indicate that the workshops demonstrated integrity, competence, dependability, trust and collaboration; a sense of connection to All of Us; and workshop results will enhance engagement with All of Us (means 4.62-4.89).

Conclusions: Equity-centered processes, such as co-creation, that are grounded in, and foster inclusion and belonging, are imperative for ensuring that community engagement strategies are community-informed and culturally appropriate.

Implications for research and/or practice: Our co-creation workshop processes have implications for advancing community engagement strategies to promote equity, inclusivity, and authentic collaboration.