JMIR Publications

ABSTRACT

Background:

Longitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital platforms can be used to increase participant access, improve study engagement, streamline data collection, and increase data quality; however, the efficacy and sustainability of digitally enabled studies rely heavily on the design, implementation, and management of the digital platform being used.

Objective:

We sought to design and build a secure, privacy-preserving, validated, participant-centric digital research platform to recruit, enroll, collect multi-modal data, and engage participants from diverse backgrounds in the National Institutes of Health’s (NIH) All of Us Research Program (AOU). AOU is an ongoing national, multiyear study aimed to build a research cohort of 1,000,000 participants that reflects the diversity of the United States, including minority, health disparate, and other populations underrepresented in biomedical research (UBR).

Methods:

We collaborated with community members, healthcare provider organizations, and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multi-site, hybrid, and remote study participation and multimodal data collection in AOU. Participants were recruited by in-person, print, and online digital campaigns. Participants securely accessed the digital research platform via web and mobile applications, either independently or with research staff support. The participant-facing tool facilitated electronic consent, multi-source data collection, including surveys, genomic results, wearables, electronic health records, and ongoing participant engagement. We also built tools for research staff to conduct remote participant support, study workflow management, participant tracking, data analytics, data harmonization, and data management.

Results:

We built a secure, participant-centric digital research platform with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% of participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (46%), rural dwelling individuals (8%), those over the age of 65 (31%), and individuals with low socioeconomic status (20%).

Conclusions:

This digital research platform demonstrated successful use among diverse participants. We built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, socioeconomic, and other UBR groups. These findings could be used as best practices for effective use of digital platforms to build and sustain cohorts of various study designs to increase engagement with diverse populations in health research.