Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study
BackgroundLongitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research platforms can be used to increase participant access, improve study engagement, str...
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JMIR Publications
2025-01-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2025/1/e60189 |
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| author | Dave Klein Aisha Montgomery Mark Begale Scott Sutherland Sherilyn Sawyer Jacob L McCauley Letheshia Husbands Deepti Joshi Alan Ashbeck Marcy Palmer Praduman Jain |
| author_facet | Dave Klein Aisha Montgomery Mark Begale Scott Sutherland Sherilyn Sawyer Jacob L McCauley Letheshia Husbands Deepti Joshi Alan Ashbeck Marcy Palmer Praduman Jain |
| author_sort | Dave Klein |
| collection | DOAJ |
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BackgroundLongitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research 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.
ObjectiveWe sought to design and build a secure, privacy-preserving, validated, participant-centric digital health research platform (DHRP) to recruit and enroll participants, collect multimodal 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 million participants that reflects the diversity of the United States, including minority, health-disparate, and other populations underrepresented in biomedical research (UBR).
MethodsWe collaborated with community members, health care provider organizations (HPOs), and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multisite, 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 DHRP via web and mobile apps, either independently or with research staff support. The participant-facing tool facilitated electronic informed consent (eConsent), multisource data collection (eg, surveys, genomic results, wearables, and electronic health records [EHRs]), 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.
ResultsWe built a secure, participant-centric DHRP with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% (n=613,976) of the participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (n=282,429, 46%), rural dwelling individuals (n=49,118, 8%), those over the age of 65 years (n=190,333, 31%), and individuals with low socioeconomic status (n=122,795, 20%).
ConclusionsWe built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, and socioeconomic backgrounds and other UBR groups. This DHRP demonstrated successful use among diverse participants. These findings could be used as best practices for the effective use of digital platforms to build and sustain cohorts of various study designs and increase engagement with diverse populations in health research. |
| format | Article |
| id | doaj-art-2af0fabd734b42c6a11cceaca68e6bfa |
| institution | Kabale University |
| issn | 1438-8871 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | JMIR Publications |
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| series | Journal of Medical Internet Research |
| spelling | doaj-art-2af0fabd734b42c6a11cceaca68e6bfa2025-01-15T21:32:22ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-01-0127e6018910.2196/60189Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation StudyDave Kleinhttps://orcid.org/0000-0001-9960-3773Aisha Montgomeryhttps://orcid.org/0000-0003-0175-3437Mark Begalehttps://orcid.org/0000-0002-3598-4498Scott Sutherlandhttps://orcid.org/0009-0009-0867-0854Sherilyn Sawyerhttps://orcid.org/0000-0002-7000-6016Jacob L McCauleyhttps://orcid.org/0000-0002-1805-1733Letheshia Husbandshttps://orcid.org/0009-0001-5674-7416Deepti Joshihttps://orcid.org/0000-0001-7217-7217Alan Ashbeckhttps://orcid.org/0009-0008-5031-2594Marcy Palmerhttps://orcid.org/0009-0000-5249-8507Praduman Jainhttps://orcid.org/0000-0002-0062-7044 BackgroundLongitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research 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. ObjectiveWe sought to design and build a secure, privacy-preserving, validated, participant-centric digital health research platform (DHRP) to recruit and enroll participants, collect multimodal 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 million participants that reflects the diversity of the United States, including minority, health-disparate, and other populations underrepresented in biomedical research (UBR). MethodsWe collaborated with community members, health care provider organizations (HPOs), and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multisite, 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 DHRP via web and mobile apps, either independently or with research staff support. The participant-facing tool facilitated electronic informed consent (eConsent), multisource data collection (eg, surveys, genomic results, wearables, and electronic health records [EHRs]), 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. ResultsWe built a secure, participant-centric DHRP with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% (n=613,976) of the participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (n=282,429, 46%), rural dwelling individuals (n=49,118, 8%), those over the age of 65 years (n=190,333, 31%), and individuals with low socioeconomic status (n=122,795, 20%). ConclusionsWe built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, and socioeconomic backgrounds and other UBR groups. This DHRP demonstrated successful use among diverse participants. These findings could be used as best practices for the effective use of digital platforms to build and sustain cohorts of various study designs and increase engagement with diverse populations in health research.https://www.jmir.org/2025/1/e60189 |
| spellingShingle | Dave Klein Aisha Montgomery Mark Begale Scott Sutherland Sherilyn Sawyer Jacob L McCauley Letheshia Husbands Deepti Joshi Alan Ashbeck Marcy Palmer Praduman Jain Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study Journal of Medical Internet Research |
| title | Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study |
| title_full | Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study |
| title_fullStr | Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study |
| title_full_unstemmed | Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study |
| title_short | Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study |
| title_sort | building a digital health research platform to enable recruitment enrollment data collection and follow up for a highly diverse longitudinal us cohort of 1 million people in the all of us research program design and implementation study |
| url | https://www.jmir.org/2025/1/e60189 |
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