eMERGE Phase IV Clinical Center at Mass General Brigham

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Abstract: To improve health equity in implementation of Genome Informed Risk Scores (GIRA) in clinical practice, the eMERGE IV administrative supplement proposal leverages our expertise from leading the All of Us Research Program retention campaign, and the MGB Decentralized Clinical Trials Program, we are proposing to deploy novel communication methods and research navigator workflows to enhance recruitment and retention in eMERGE. Specific aims: Aim 1: Enhance equity in recruitment and return of GIRA results by employing novel communications methods to diverse participants at baseline and at follow-up survey time points. We will develop culturally sensitive new recruitment materials for Hispanic/Latino and Black participants, utilizing plain language and graphics to explain study steps more clearly, explain that survey completion is required to receive results and the importance of fully engaging at all points in this longitudinal study. Our Spanish-speaking team will translate existing study materials to improve comprehension by Hispanic/Latino participants. New and existing materials will be shared throughout the eMERGE network to reduce survey data missingness and improve health equity. Aim 2: Deploy a research navigator model with a diverse study team, to assign a navigator to each participant, to guide and assist participants at each step in eMERGE from consent, survey completion, sample collection, GIRA return, through collection of follow-up surveys. We will use omni-channel communications based on participant choice (phone, text, email) and track successful methods to inform the eMERGE network whether the navigator model with personalized communication methods can be used at other sites. For participants who do not complete surveys, we will perform chart reviews to collect key variables needed for GIRA to increase the rate of equitable data collection and return of GIRA reports with minimal missing data on demographic, clinical, and family history risk factors. Given the striking disparities in data missingness the early phase of eMERGE IV by race and ethnicity, and the decision by the network not to send samples for PRS analysis unless baseline survey data is provided by participants, the study is at risk for introducing disparities in the return of results, thus biasing its conclusions. Achieving health equity requires extra effort and focused methods to enhance education, encourage full participation at each step of the program, provide assistance at an individual level and gather data from available sources such as EHRs if we aim to eliminate disparities in health and health care. Lessons learned in this administrative supplement will be shared across the eMERGE network to enhance health equity of the entire study.