All of Us Introduces Video Collection to Engage LGBTQIA+ Communities
You are reading Part 2 of RTI International’s series on their work with the National Institutes of Health’s All of Us Research Program. Learn more about their role and process in Part 1 of the series.
The National Institutes of Health’s All of Us Research Program aims to accelerate medical breakthroughs and advance precision medicine. One of the program’s core values is for participants to reflect the diversity of the United States and its territories. This includes participants from different races, ethnicities, age groups, and regions of the country. Diversity also includes gender identity, sexual orientation, socioeconomic status, education, disability, and health status. To support the engagement of lesbian, gay, bisexual, transgender, queer, intersex, asexual, or additional sexual and gender minority (LGBTQIA+) people in All of Us, we co-created a community-driven and research-based video collection.
Our earlier research efforts identified barriers to LGBTQIA+ community members’ engagement with and enrollment in All of Us. Barriers included lack of awareness, representation of LGBTQIA+ communities in existing assets, and intentional outreach to LGBTQIA+ communities; concerns about privacy, data security, and participant burden; distrust of research and/or government agencies; and unclear value or benefit related to participation. We conducted collaborative workshops with LGBTQIA+ community members to validate the barriers, brainstorm potential digital solutions, and test 27 unique ideas for potential solutions to overcome the barriers. A video series about how diversity in research matters was the idea that community members rated the highest in receptivity.
Our team collaborated with PRIDEnet, an All of Us National Community Engagement Partner focused on LGBTQIA+ engagement to film and produce a collection of videos designed to address barriers to engagement and enrollment. First, we produced a documentary-style short video about Donald M. Bell, a lifelong activist and PRIDEnet Ambassador, who speaks about his journey as an All of Us participant and member of the LGBTQIA+ community and why inclusive health research is important to him. Next, we produced a series featuring LGBTQIA+ health researchers conveying the value of participation; addressing specific barriers such as privacy and data security and representation; and speaking to themes identified as important to the community to demonstrate intentionality in programmatic outreach (e.g., positivity, community participation).
To assess the extent to which the video collection addressed the barriers identified by the community, we engaged community advisory group members and LGBTQIA+ community members in a set of virtual workshops. Most workshop participants agreed that the videos were designed to reach the LGBTQIA+ community, featured diverse members of the LGBTQIA+ community, and featured personal stories. The majority agreed that the videos would raise awareness of All of Us and communicate the value of joining. Less than a third of workshop participants agreed that the videos made clear who is eligible to participate in All of Us or showed how easy it is to participate. Workshop participants also recommended future videos be kept short to maintain viewer attention. We developed additional videos in response to these findings, including one that discusses the ease of participation and a series of short-form videos filmed in Spanish (e.g., what is All of Us, who is eligible, why participation is important).
The full list of videos developed for LGBTQIA+ audiences can be viewed on the All of Us Research Program channel on YouTube.
This work is supported by NIH’s All of Us Research Program under award number OT2OD028395. All of Us is a service mark of the U.S. Department of Health and Human Services.