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 3 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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Effects of a randomized controlled hiking intervention on daily activities, sleep, and stress among adults during the COVID-19 pandemic

Anzman-Frasca,

Drozdowsky,

Zayatz

et al. 2023

BMC Public Health

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Background Physical activity promotes health, and physical activity done outdoors in nature may be particularly beneficial. We conducted two randomized studies to examine the implementation of a winter hiking intervention and whether this intervention affected activity choices and aspects of well-being during the COVID-19 pandemic. Methods Convenience samples of adults (n = 53; n = 51) were recruited into two different randomized studies in 2021 and 2022 respectively. Participants completed online surveys at baseline and 6 and 11–12 weeks later. Participants were randomized to a study group (intervention or control) shortly after the baseline assessments. In both studies, the intervention group received free access to a regional winter hiking challenge. In the second study, we also provided winter traction cleats to this group to facilitate engagement in the hiking challenge. Descriptive statistics were used to summarize intervention implementation, including participants’ engagement in challenge hikes. Repeated measures ANOVA models were used to test intervention effects on key outcome variables, including hiking frequency via the Pleasant Activities List, stress via the Perceived Stress Scale, and sleep duration via the Pittsburgh Sleep Quality Index. Results In the first study, the intervention group’s engagement in challenge hikes was low (38.5%); reported barriers included access to winter hiking equipment. In the second study, when winter traction cleats were provided, engagement in the intervention was higher, and the intervention increased hiking frequency and improved sleep. There were no significant intervention effects on stress, but the direction of effects was in the expected direction. Conclusions Results highlight some potential positive impacts of this intervention designed to facilitate access to winter hiking. Future research could examine whether effects are stronger in a larger sample, in which additional barriers to engagement are addressed. Trial registration This study was registered at clinicaltrials.gov on 28/12/2020 prior to participant enrollment (NCT04685681), https://clinicaltrials.gov/ct2/show/NCT04685681.

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

Cited by 3 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

Effects of a randomized controlled hiking intervention on daily activities, sleep, and stress among adults during the COVID-19 pandemic

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