Assets in Action: A Partner Perspective on Using and Adapting Stakeholder Informed Materials

Background:

All of Us understands that language can be a difficult barrier to overcome when accessing health care and information. To increase accessibility, All of Us has translated every aspect of the return of DNA results into Spanish. This includes informational materials, the consent process, and the journey to receive and understand DNA results.

Program background:

All of Us relies on community engagement partners as trusted messengers to reach, connect with, and enroll research participants from communities historically underrepresented in biomedical research. A presenter from the National Alliance for Hispanic Health (NAHH), one of the All of Us community engagement partners, will discuss how they communicate about genetic information and the return of DNA results to their Hispanic and Latino communities. Attendees will hear first-hand how NAHH contributed to the development of materials through the Asset Development Working Groups and our Cultural Awareness Committee.

Evaluation Methods and Results:

NAHH created informational materials for health care providers who serve Hispanic/Latino communities and have patients receiving health-related DNA results from All of Us. These provider materials underwent multiple feedback sessions before being made available to all community partners. NAHH has also worked closely with other All of Us staff and partners to provide genomic training sessions to ambassadors and promotores in English and Spanish. Thanks to these assets, English and Spanish-speaking participants are supported by a knowledgeable community committed to helping them understand their DNA results.

The presenter will share their experiences with engaging with health care providers, participants, and potential participants, discuss which assets they turn to in the field, and report on community response to the materials and the return of DNA results experience.

Conclusions:

Although All of Us communications to promote understanding of genetic results are developed for a national audience, they may be used differently in the field by community partners. Involving community partners in asset development and review can help identify communication gaps and reach populations that have historically been excluded from biomedical research.

Implications for research and/or practice:

Attendees will take away practical skills and tips on developing Spanish-language communications and collaborating with community partners to support participants when they receive DNA results.