Accepted for/Published in: Interactive Journal of Medical Research
Date Submitted: Jan 26, 2024
Date Accepted: Jan 17, 2025
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Long term engagement of diversity in decentralized research cohorts: All of Us Research Program Case Study
ABSTRACT
Background:
The generalizability of clinical research hinges on good study designs, which includes the recruitment and maintenance of a representative study population. This study delves into the evolution of the population characteristics of the 329,038 participants who enrolled and participants in The All of Us Research Program (AoURP), a decentralized study with an aim to represent the diversity of the United States.
Objective:
The primary objectives of this study were to assess alterations in the demographic composition of the cohort at different protocol stages within AoURP, while also analyzing completion rates and timeframes for survey and sub-study completion.
Methods:
We conducted a longitudinal analysis of the AoURP data, tracking changes in demographic makeup, completion rates, and completion times for surveys and sub-studies. Comparative analyses were performed on socio-demographic characteristics of participants involved in post-enrollment study components.
Results:
The socio-demographics of the cohort that participated in components post enrollment (e.g. optional components) of the study differ significantly from that of the recruited population. The proportion of self-identified white participants increased by 21.2% while Black or African American participants' proportion decreased by 12.18% (p value<= 0.01). People who identified as White (52.7%) and Non-Hispanic (42.21%) tend to be more engaged compared to those identifying as Black or African American (15.76%) Asian (38.72%) race, or of Hispanic ethnicity (20.7%) (P <0.01). Participants' response times to study surveys also varied across all demographic groups (P <0.001). Furthermore, those identifying as White skipped fewer survey questions (1.19%) compared to those identifying as Black or African American (1.40%) or other racial and ethnic identities (P <0.001).
Conclusions:
The AoURP dataset emerges as an exceptional resource for investigating diverse public health concerns. However, the longitudinal analysis of participant-level data underscores a significant skew in population diversity. Consequently, strategies for sustained engagement and retention over the long term must be meticulously formulated and implemented to ensure the continued representativeness and utility of the study's findings.
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