Helping the science speak for itself: lessons learned developing video summaries for a precision medicine and health disparities collaborative.

Skills to effectively communicate research findings are important to expand meaningful inclusion of the public in research, but attempts to summarize findings may be challenging given increasing reliance on succinct communications. Led by our Ethics Advisory Board and within the context of this work with the Precision Medicine and Health Disparities Collaborative, the authors decided to engage in the iterative process of developing video summaries. Our stakeholders taught us to incorporate novel strategies to engage broader audiences, leading to the production of two video summaries, a public summary toolbox and an adapted process for developing video summaries. The authors refreshed the static concept of 'research summaries' and found ways of producing summaries which emphasized a dynamic reframing of the shared benefits of science.

Health communications related to research (like summaries about research studies) are important to the health of diverse communities. It is up to investigators to publicize the findings of their research, and written communications may not be the most effective way of getting the public excited about or interested in science. Our Ethics Advisory Board encouraged us to pursue a more dynamic format to report scientific findings. Led by our Ethics Advisory Board and other investigators of a collaborative precision medicine research center, the authors created two video summaries based on the findings of two research articles. In this article, the authors describe an iterative, stakeholder-centered process of creating video summaries to engage nonscientists in research, and make science more relevant and meaningful to the general public.

Precision Medicine: Familiarity, Perceived Health Drivers, and Genetic Testing Considerations Across Health Literacy Levels in a Diverse Sample.

A clear awareness of a patient's knowledge, values, and perspectives is an important component of effective genetic counseling. Advances in precision medicine, however, have outpaced our understanding of patient perceptions of this new approach. Patient views may differ across the three domains of precision medicine (genetics, behavioral, and environmental determinants of health), ethnic/racial groups, and health literacy levels. This study describes and compares group differences in familiarity, perceptions, and preferences for precision medicine in a diverse sample. Between 2016 and 2017, 252 participants completed a 10-15-min survey in three primary care clinics in Florida and Tennessee. The final sample was 42.5% African American/Black, 25.8% Hispanic/Latino, 25.0% White, and 6.7% other ethnicity/race. Less than a quarter of participants reported being familiar with the term "precision medicine," but were more familiar with basic genetic terms. Participants with higher health literacy reported greater familiarity with terms (p ≤ .003). African Americans/Black participants were more likely to identify ethnicity/race and discrimination as influencing their health (p ≤ .004). When deciding to get a genetic test, individuals across ethnic/racial groups shared similar considerations. Those with higher health literacy, however, gave significantly greater importance to provider trust (p ≤ .008). Given the recent emergence of precision medicine, at present there may be limited differences in patient perceptions across ethnic/racial groups. Culturally sensitive efforts, tailored to health literacy level, may aid equitable precision medicine uptake.

Partnering to harmonize IRBs for community-engaged research to reduce health disparities.

Emerging advances in health disparities research include controlled trials and comparative effectiveness studies that are frequently conducted at multiple community and academic sites. Review by different institutional review boards (IRBs) presents a major impediment to the timely and effective conduct of such research. When research involves minority and underserved communities as well as multiple geographic regions, institutional requirements and interpretation of ethical standards may vary substantially. Such variations can complicate the informed consent process and research protocol, and may undermine participant respect and trial quality. In addition, multiple IRB review can lead to unnecessary delays, jeopardizing funding and capacity to perform collaborative projects. In response to these issues, the Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN) is developing a community-partnered approach to streamlining IRB review across its consortium of 18 RCMI grantee institutions that will ensure compliance while enhancing the quality of health disparities research.