Creating Equity-Centered Health Communications Requires Diverse Input: How the All of Us Research Program Created a Model to Gather, Analyze, and Apply Stakeholder Feedback

Background:

The All of Us Research Program, a federally supported longitudinal research program, is making DNA information more accessible by returning free, personalized results about hereditary disease risk and pharmacogenetics to tens of thousands of research participants who want them.

Program background:

The return of health-related DNA results to our research participants presented a complex health communications and user experience challenge. The return experience includes genetic health education, participant consent, DNA results report generation, and genetic counseling. The complexity is magnified by varying levels of health literacy and the diversity of the research program’s participant audience: 80% come from communities that have been historically left out of health research, including racial and ethnic minority populations, people living in rural communities, sexual and gender minorities, older adults, and people living with disabilities.

Evaluation Methods and Results:

Presenters from the research program will share a stakeholder feedback model that public health communications and user experience professionals can learn from, apply, and adapt to their own organizations, projects, and audiences to ensure delivery of an inclusive, accessible, and equity-centered experience to a diverse audience.

This model is built on two years of experience applying a variety of feedback-generation methods to inform the return of DNA results experience. Methods included interviews, listening sessions, surveys, comprehension testing, usability testing, focus groups, and content reviews. Using these methods, we obtained a spectrum of stakeholder feedback on this multifaceted audience experience. The model also covers the processes we used to capture, categorize, and prioritize implementation of the generous feedback received.

Conclusions:

Integrating stakeholder feedback during planning and implementation is an iterative and valuable approach to involving diverse participants and program partners in health communications and user experience. We welcome the opportunity to share with attendees our combined learnings and experiences on the methods and processes the research program used to gather, categorize, prioritize, implement, and measure stakeholder feedback. Our goal is to continue the conversation about how public health communicators can apply our communications and design skills to the mission of advancing health equity and to learn about the experiences from others.

Implications for research and/or practice:

Health communications and user experience professionals working in public health and health research can adapt our stakeholder feedback model for gathering, categorizing, prioritizing, implementing, and measuring stakeholder feedback to fit the specific needs of their organization, projects, and audiences.