The All of Us Research Program's Social Media Outreach to Underrepresented Populations: Mixed Methods Analysis

The All of Us Research Program (AoURP) is a prominent precision medicine research initiative committed to diverse participation. The program harnesses digital outreach as a key strategy for recruiting and retaining underrepresented populations, using language that sometimes invokes notions of solidarity. This targeted recruitment of underrepresented groups and potential use of solidaristic language raise concerns about how participation will manifest tangible benefits for these populations and whether institutions assume responsibility for addressing past and present research harms.

This study examines how the AoURP conceptualizes "diversity" in its social media outreach and how this implementation aligns with the program's stated goals. Specifically, we perform a mixed methods analysis to descriptively capture (1) which underrepresented populations are targeted by the AoURP's social media and (2) how solidaristic messaging is used, if at all, in these calls for participation.

AoURP social media posts (n=380) from a 6-month period in 2020-2021 were coded to identify visual depictions and explicit mentions of any "underrepresented in biomedical research" (UBR) categories officially targeted by the program. To then characterize UBR-specific appeals, we performed a thematic analysis of UBR-targeted posts, using a coding scheme that identified unsolidaristic language (ie, appeals to individual benefits) and solidaristic language (ie, appeals to benefitting others, attaining shared goals, and addressing injustices).

Among the 10 UBR categories officially recognized by the AoURP, "Race and Ethnicity" (187/380, 49% of posts) and "Age" (71/380, 19%) were the most frequently emphasized, while each of the other remaining categories was rarely invoked (<4/380, 1%). The thematic analysis further identified calls to participate that spanned receiving genetic results (ie, individual benefits), uncovering family and community disease predispositions (ie, benefitting others), improving the future of health (ie, achieving shared goals), and addressing data and health disparities (ie, resolving injustices).

In addition to highlighting UBR categories that are more and less emphasized in the AoURP's social media outreach, we also find that the program's messaging indeed resembles a solidaristic appeal to participate. Drawing upon the existing literature on solidarity, we leverage conceptualizations of solidarity as a shared practice grounded in mutuality and bidirectionality to question the AoURP's appeals when institutions fail to fully reciprocate this solidarity. Specifically, we raise concerns about (1) unclear links between participation and addressing health disparities, (2) incomplete acknowledgment of institutions' role in data disparities, and (3) the use of empowerment rhetoric that diverts the onus for correcting these disparities onto participants. Finally, we consider the implications of these issues for future outreach efforts.