Communicating research findings as a return of value to All of Us Research Program participants: insights from staff at Federally Qualified Health Centers

J Am Med Inform Assoc. 2024 Dec 1;31(12):2962-2967. doi: 10.1093/jamia/ocae207.

Abstract

Objectives: Research participants value learning how their data contributions are advancing health research (ie, data stories). The All of Us Research Program gathered insights from program staff to learn what research topics they think are of interest to participants, what support staff need to communicate data stories, and how staff use data story dissemination tools.

Materials and methods: Using an online 25-item assessment, we collected information from All of Us staff at 7 Federally Qualified Health Centers.

Results: Topics of greatest interest or relevance included income insecurity (83%), diabetes (78%), and mental health (78%). Respondents prioritized in-person outreach in the community (70%) as a preferred setting to share data stories. Familiarity with available dissemination tools varied.

Discussion: Responses support prioritizing materials for in-person outreach and training staff how to use dissemination tools.

Conclusion: The findings will inform All of Us communication strategy, content, materials, and staff training resources to effectively deliver data stories as return of value to participants.

Keywords: All of Us Research Program; Federally Qualified Health Centers (FQHCs); health communications; research dissemination; return of research.

MeSH terms

  • Biomedical Research
  • Communication
  • Female
  • Humans
  • Information Dissemination*
  • Male
  • United States