A Deeper Dive into a Stakeholder Feedback Model to Increase Health Equity and Inclusion in the Return of DNA Information to Research Participants

Background:

The NIH’s All of Us Research Program is an ambitious initiative to collect health data from at least one million participants who reflect the diversity of the United States. This information is made available to registered researchers in a secure, cloud-based database. Currently, All of Us has over 625,000 enrolled participants.

Program background:

The All of Us Research Program intentionally elevates the voices of the communities who participate in our research. We prioritize the feedback of our staff who focus on enrollment and retention, as they advocate on behalf of participants and relay the direct feedback they receive from them. Presenters from All of Us will share in-depth findings from a stakeholder feedback model developed while preparing to return health-related DNA results to the program’s participants in both English and Spanish.

Evaluation Methods and Results:

Presenters will describe the benefits and challenges of creating a committee to review health communications materials – including genetic reports – for cultural appropriateness. Our committee represented AANHPI, American Indian and Alaska Native, Black/African American, Hispanic, LGBTQ+, Veteran, and other communities. We will share how other organization’s can adapt or tailor this approach to their work.

Panelists will review comprehension testing and usability results -- which ultimately led to 97%-98% comprehension among individuals tested – and present design and language recommendations for other health communicators. We will demonstrate our success in this effort through call center and satisfaction survey data.

All of Us staff and partners will discuss how engaging with staff through listening sessions and office hours improved our content strategy. This feedback ultimately led to significant changes to our communications strategy and the launch of a priming communications campaign that demonstrated significant participant interest in the topics of genomics and DNA results.

Presenters will describe how we overcame or mitigated common risks and challenges in health communication campaigns, including IRB review and ensuring consistent messaging across a large partner network.

Conclusions:

The intentional inclusion of stakeholders strengthened the planning and delivery of a complex health communications campaign. Data demonstrates high participant comprehension and satisfaction with the return of DNA results. The program learned important lessons for delivering equity-centered future campaigns that it is excited to share with attendees to incorporate into their health communication and marketing efforts.

Implications for research and/or practice:

Attendees will take away practical lessons for establishing stakeholder feedback processes; writing plain language copy on complex, sensitive health topics; and fostering inclusion and understanding among communities who have historically been underrepresented in health research.