Design and Implementation of the All of Us Research Program COVID-19 Participant Experience (COPE) Survey

Schulkey, Claire E.; Litwin, Tamara R.; Ellsworth, Genevieve; Sansbury, Heather; Ahmedani, Brian K.; Choi, Karmel W.; Cronin, Robert E.; Kloth, Yasmin; Ashbeck, Alan W; Sutherland, Scott; Mapes, Brandy; Begale, Mark; Bhat, Geeta; King, Paula; Marginean, Kayla; Wolfe, Keri Ann; Kouame, Aymone; Raquel, Carmina; Ratsimbazafy, Francis; Bornemeier, Zach; Neumeier, Kyle; Baskir, Rubin; Gebo, Kelly A.; Denny, Joshua C.; Smoller, Jordan W.; Garriock, Holly A.

doi:10.1093/aje/kwad035

Cited by 5 publications

(2 citation statements)

References 20 publications

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“…Previous study of the COPE survey showed that the modification of surveys led to a significant increase (p < 0.001) in the participant response rate over 10 months of survey delivery. [28] Overall, completion rates for the COPE survey among individuals enrolled under UBR categories showed an increase from 11% in the first survey to 16% in the final survey. These findings underscore the significance of utilizing a digital platform able to accommodate rapid implementation of protocol amendments.…”

Section: Study Data Collectionmentioning

confidence: 91%

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: The All of Us Research Program (Preprint)

Begale,

Klein,

Klein

et al. 2024

Preprint

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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 The National Institutes of Health’s (NIH) All of Us Research Program (AOU) is an ongoing national, multiyear study aimed at building a large research cohort that reflects the diversity of the United States, including minority, health disparate, and other populations underrepresented in biomedical research (UBR). We sought to design and build a highly secure, privacy-preserving, validated, participant-centric digital research platform to recruit, enroll, and engage AOU participants from diverse backgrounds. METHODS AOU applied digital research methods to facilitate multi-site, hybrid, and remote study participation and multimodal data collection. We collaborated with community members, healthcare provider organizations, and NIH leadership to design, build, and validate a secure, feature-rich digital research platform based upon the core values of AOU. Participants were recruited by many methods, including in-person, print, and online digital campaigns. Participants accessed a secure 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 study staff and researchers to provide remote participant support, study workflow management, participant tracking, data analytics, data harmonization, and data management tools. RESULTS We built a secure, participant-centric digital research platform with engaging functionality used to recruit, engage, and collect data from diverse participants throughout the United States. As of April 2024, 87% of participants enrolled via the platform are 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 user-friendly, 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. CLINICALTRIAL N/A

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Section: Study Data Collectionmentioning

confidence: 91%

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: The All of Us Research Program (Preprint)

Begale,

Klein,

Klein

et al. 2024

Preprint

Self Cite

View full text Add to dashboard Cite

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“…Coping with COVID-19. This survey uses the All of Us Study COVID-19 Participant Experience (COPE) instrument, which asks participants to select all that apply from a list of strategies that they use "to cope with social distancing and isolation" (All of Us Study, n.d.; Schulkey et al, 2023).…”

Section: Methodsmentioning

confidence: 99%

The Social, Mental, and Physical Health Impacts of the COVID-19 Pandemic on People With HIV: Protocol of an Observational International Multisite Study

Cuca,

Horvat Davey,

Corless

et al. 2023

J Assoc Nurses AIDS Care

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As the COVID-19 pandemic spread across the world, immunocompromised individuals such as people with HIV (PWH) may have faced a disproportionate impact on their health and HIV outcomes, both from COVID-19 and from the strategies enacted to contain it. Based on the SPIRIT guidelines, we describe the protocol for an international multisite observational study being conducted by The International Nursing Network for HIV Research, with the Coordinating Center based at the University of California, San Francisco (UCSF) School of Nursing. Site Principal Investigators implement a standardized protocol to recruit PWH to complete the study online or in-person. Questions address demographics; HIV continuum of care indicators; mental and social health; COVID-19 and vaccination knowledge, attitudes, behaviors, and fears; and overall outcomes. Results of this study will contribute to knowledge that can inform responses to future public health crises to minimize their impacts on vulnerable populations such as PWH.

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Identifying diagnosed major chronic diseases associated with recent housing instability among aging adults: data from the ‘All of Us’ research program

Beydoun,

Mayno Vieytes,

Beydoun

et al. 2024

Journal of Public Health

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Background Housing instability is a known barrier to healthcare utilization potentially affecting the prevention, diagnosis and treatment of chronic diseases among diverse groups of adults. We examined the intersection of recent housing instability with prevalent cardiovascular disease, diabetes, cancer and psychiatric diagnoses among aging adults. Methods Cross-sectional data on 147 465 participants of the ‘All of Us’ Research Program (6 May 2018–1 July 2022), ≥50 years of age at enrollment, were analyzed. Self-reported housing instability over the past 6 months was examined in relation to diagnosed conditions at age ≥50 years based on electronic health records. Multivariable logistic regression models sequentially adjusting for demographic and socioeconomic characteristics were constructed to estimate odds ratios (OR) with their 95% confidence intervals (CI). Results After adjusting for confounders, past 6 months housing instability was associated with lower odds of diagnosed cardiovascular disease (OR = 0.89, 95% CI: 0.87, 0.93) and cancer (OR = 0.82, 95% CI: 0.78, 0.86), higher odds of diagnosed psychiatric (OR = 1.35, 95% CI: 1.30, 1.40) conditions, but was unrelated to diagnosed diabetes (OR = 0.98, 95% CI: 0.94, 1.01). Conclusions Recent housing instability among aging adults is positively associated with psychiatric diagnoses, but negatively associated with cardiovascular and cancer diagnoses, with implications for chronic disease prevention.

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Design and Implementation of the All of Us Research Program COVID-19 Participant Experience (COPE) Survey

Cited by 5 publications

References 20 publications

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: The All of Us Research Program (Preprint)

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: The All of Us Research Program (Preprint)

The Social, Mental, and Physical Health Impacts of the COVID-19 Pandemic on People With HIV: Protocol of an Observational International Multisite Study

Identifying diagnosed major chronic diseases associated with recent housing instability among aging adults: data from the ‘All of Us’ research program

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