Ethnicity & Disease

Care and Precision Medicine Research in the Time of COVID-19

Ison JM, Karlson EW, Jackson JD, Hille A, McCloud C, Bor M, Zhou G, Clark CR.

Abstract

Purpose: Enhancing the bidirectional benefit of precision medicine research infrastructure may advance equity in research participation for diverse groups. This study explores the use of research infrastructure to provide human-centered COVID-19 resources to participants as a part of their research participation.

Design: The All of Us New England (AoUNE) consortium research team developed standardized check-in telephone calls to ask participants about their well-being and share COVID-19 resources.

Participants: A total of 20,559 participants in the AoUNE consortium received a COVID-19 check-in call.

Methods: Research assistants called participants during March-April 2020, distributed COVID-19 resources to interested participants, and subsequently rated call tone.

Results: Of the total cohort participants called, 8,512 (41%) spoke with a research team member. The majority of calls were rated as positive or neutral; only 3% rated as negative. African American and Black as well as Hispanic populations requested COVID-19 resources at higher rates than other groups.

Conclusions: Calls made to AoUNE participants were received positively by diverse groups. These findings may have implications for participant-centered engagement strategies in precision medicine research.