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No Strings Attached: Building a Sustained Awareness Campaign that Goes Beyond Action Focused Activities to Increase Knowledge about Personalized DNA Results

Kimberly Morrison, MPH, Jennifer Shelley, MMC, MS and Ryan Hollm, MPH, Division of Communications, National Institutes of Health, The All of Us Research Program, Bethesda, MD

Background:

The All of Us Program seeks to collect and study health information from at least one million participants who reflect the diversity of the United States. In December 2022 All of Us began offering free health-related DNA results in an effort to provide health information back to participants. This milestone marks an important step towards returning value to our participants and helping them learn about their health.

Program background:

The infrastructure to build the return of DNA results process took a few years to establish, allowing us to prime participants to receive and interpret DNA results. After conducting a series of listening sessions to identify gaps in knowledge, we developed the Genomics Outreach Campaign in April 2022.

This was a “no-strings attached” campaign: messages focused on building awareness, rather than completion of specific research activities. The primary goals of the campaign were to:

  • Increase transparency by providing progress updates
  • Set expectations around DNA results
  • Clearly communicate complex genomics topics
  • Drive engagement without asking participants to complete research activities
Secondary goals included reducing participant frustration about the wait time for DNA results and promoting genomics health literacy.

Evaluation Methods and Results:

Over 12 months, we sent eight emails, eight SMS, and one letter to over 450,000 participants. Messages were available in English and Spanish.

To address gaps in knowledge and increase transparency, each message focused on a different DNA topic and included a progress update on returning DNA results to participants. We measured the clarity of our English emails using the Flesch-Kincaid Grade Level. After adjusting for key words used regularly in our communications, the average Flesch-Kincaid Grade Level was 6.9 (6.5-7.6; min-max).

To assess engagement, we tracked average delivery rate, open rate, post login rate, and click through rate for email and SMS messages. We tracked UTM activity from vanity URLs in our letter. Primary CTAs either asked participants to log in to their account to update contact information or check their eligibility to receive DNA results, or linked to our website with a deeper dive into DNA results. Across all messages, we found that participants were engaged, with an average email open rate and click rate of 44% and 8.7%, respectively. We also observed that primary CTAs drove secondary activities unrelated to genomics, including completion of health surveys and EHR consents.

Conclusions:

The Genomics Outreach Campaign was a new approach within All of Us to engage with a large cohort. Instead of periodic messages centered around completing specific activities, this campaign was a sustained effort to foster participant trust, excitement for program activities, and genomics health literacy. Overall, we found that this strategy was an important engagement method with participants eager to receive DNA results and indirectly promoted completion of research activities in other areas of the program.

Implications for research and/or practice:

  • Employing clear communications centered around transparency can help address participant frustrations and maintain engagement.
  • Sustained awareness building campaigns that go beyond action-focused strategies show potential for increasing engagement.
  • Engaging with participants about topics of interest, such as DNA results, can drive activity completion beyond the primary CTA.