Design and Implementation of the All of Us Research Program COVID-19 Participant Experience (COPE) Survey
Schulkey CE, Litwin TR, Ellsworth G, Sansbury H, Ahmedani BK, Choi KW, Cronin R, Kloth Y, Ashbeck AW, Sutherland S, Mapes B, Begale M, Bhat G, King P, Marginean K, Wolfe KA, Kouame A, Raquel C, Ratsimbazafy F, Bornemeier Z, Neumeier K, Baskir R, Gebo KA, Denny J, Smoller JW, and Garriock HA. Design and Implementation of the All of Us Research Program COVID-19 Participant Experience (COPE) Survey. Am J Epidemiol 2023.
American journal of epidemiology
In response to the rapidly evolving COVID-19 pandemic, the All of Us Research Program longitudinal cohort study developed the COVID-19 Participant Experience (COPE) survey to better understand the pandemic experiences and health impacts of COVID-19 on diverse populations within the United States. Six survey versions were deployed between May 2020 and March 2021 covering mental health, loneliness, activity, substance use, and discrimination, as well as COVID-19 symptoms, testing, treatment, and vaccination. A total of 104,910 All of Us Research Program participants, of whom over 73% were from communities traditionally underrepresented in biomedical research, completed 275,201 surveys; 9,693 completed all six surveys. Response rates varied widely among demographic groups and were lower among participants from certain racial and ethnic minority populations, participants with low income or educational attainment, and participants with a Spanish language preference. Survey modifications improved participant response rates between the first and last surveys (13.9% to 16.1%, p < 0.001). This paper describes a dataset with longitudinal COVID-19 survey data in a large, diverse population that will enable researchers to address important questions related to the pandemic, a dataset which is of additional scientific value when combined with the program's other data sources.
ePub ahead of print