The Impact of COVID-19 on the <i>All of Us</i> Research Program

Hedden, Sarra L.; McClain, James J.; Mandich, Allison; Baskir, Rubin; Caulder, Mark S; Denny, Joshua C.; Hamlet, Michelle R J; Das, Irene Prabhu; Ford, Nicole Mc Neil; Lopez-Class, Maria; Elmi, Ahmed; Wallace, Roshedah; Linkie, Amantha; Garriock, Holly A.

doi:10.1093/aje/kwac169

Cited by 9 publications

(7 citation statements)

References 6 publications

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“…While 79% of participants enrolling in All of U s are passively sharing electronic health records, about 52% of participants have not completed postenrollment surveys or tasks in the past 18 months. In March 2020, staff support was hindered as all enrollment sites paused in-person activities and sites developed safety protocols for the COVID-19 pandemic 3. Although the majority of sites are now accessible for in-person activity (∼60% by December 2022), participants are not always willing to attend in-person appointments.…”

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confidence: 99%

“…In March 2020, staff support was hindered as all enrollment sites paused in-person activities and sites developed safety protocols for the COVID-19 pandemic. 3 Although the majority of sites are now accessible for in-person activity (∼60% by December 2022), participants are not always willing to attend in-person appointments. As such, the program began to consider historically well-validated modes to remotely facilitate survey completion.…”

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confidence: 99%

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Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program

Peterson,

Hedden,

Seo

et al. 2024

Journal of Public Health Management and Practice

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The All of Us Research Program is a longitudinal cohort study aiming to build a diverse database to advance precision medicine. The COVID-19 pandemic hindered the ability of participants to receive in-person assistance at enrollment sites to complete digital surveys. Therefore, the program implemented Computer-Assisted Telephone Interviewing (CATI) to facilitate survey completion remotely to combat the disrupted data collection procedures. In January 2021, All of Us implemented a 1-year CATI Pilot supporting 9399 participants and resulting in 16 337 submitted surveys. The pilot showed that CATI was successful in increasing survey completion and retention activities for the All of Us Research Program, given the additional remote support offered to participants. Given the success of the CATI Pilot, multimodal survey administration will continue.

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confidence: 99%

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confidence: 99%

Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program

Peterson,

Hedden,

Seo

et al. 2024

Journal of Public Health Management and Practice

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“…On March 16, 2020, NIH paused in-person Program activities to assist in preventing the spread of COVID-19 ( 23 ). UBR participants were disproportionality impacted during the COVID-19 pause of in-person activities.…”

Section: Methodsmentioning

confidence: 99%

Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program

Kini

Dave

Weinstein

2023

Front. Digit. Health

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The All of Us Research Program (All of Us or Program) is an ongoing longitudinal data collection operated by the National Institutes of Health (NIH). The Program aims to improve healthcare for all through the development of a biomedical research resource reflective of the diversity of the United States that includes Underrepresented in Biomedical Research (UBR) groups. Federally Qualified Health Centers (FQHCs) are a key recruitment stream of UBR participants, which are community based and provide primary care and preventive services in medically underserved areas. Over 90% of FQHC patients enrolled in All of Us to date are UBR. The COVID-19 pandemic caused a pause in All of Us activities. Re-starting the activities was a challenge, especially due to the digital divide faced by FQHC participants, and that most Program activities are primarily completed via web-based portal from a computer or a mobile device. This paper investigates the extent to which digital readiness impacted recruitment and sustainment of a pre-pandemic sample of 2,791 FQHC participants to the Program. Digital readiness was defined by access to home-based or other internet-accessing devices, and participants’ comfort level using such devices. Results from multivariable logistic regression models showed that lower age, more education, female gender identity, and higher income were associated with higher digital readiness (p ≤ 0.01). Race, rurality, and sexual orientation status were not significant factors associated with digital readiness. Older participants had higher odds of completing Program activities, even though less digitally ready than their younger peers, as they often completed the activities during their in-person clinical visits. A subsequent weighted model demonstrated that FQHC participants who were digitally ready had 27% higher odds of completing Program activities than those not digitally ready. The data highlight the need for improved connectivity and sustainment between longitudinal data collection, research programs, and UBR participants, particularly among those facing the digital divide. Quantifying digital challenges provide operational insights for longitudinal data collection (All of Us, or others), and broadly, other aspects of digital medicine such as telehealth or patient portals by recognizing digital readiness of participants and patients, and the level of support required for success.

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“…This further shows the need for high-touch methods to build rapport with study participants. However, high-touch methods such as in-person staff assistance ceased as an option for All of Us participants in March 2020 when the Program paused all in-person activities at all enrollment sites due to the pandemic to develop safety protocols and modified workflows for in-person activity ( 9 ).…”

Section: Introductionmentioning

confidence: 99%

Understanding the use of CATI and web-based data collection methods during the pandemic among digitally challenged groups at FQHCs: data from the All of Us Research Program

Kini,

Cawi,

Duluk

et al. 2024

Front. Digit. Health

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IntroductionThe All of Us Research Program (Program) is an ongoing epidemiologic cohort study focused on collecting lifestyle, health, socioeconomic, environmental, and biological data from 1 million US-based participants. The Program has a focus on enrolling populations that are underrepresented in biomedical research (UBR). Federally Qualified Health Centers (FQHCs) are a key recruitment stream of UBR participants. The Program is digital by design where participants complete surveys via web-based platform. As many FQHC participants are not digitally ready, recruitment and retention is a challenge, requiring high-touch methods. However, high-touch methods ceased as an option in March 2020 when the Program paused in-person activities because of the pandemic. In January 2021, the Program introduced Computer Assisted Telephone Interviewing (CATI) to help participants complete surveys remotely. This paper aims to understand the association between digital readiness and mode of survey completion (CATI vs. web-based platform) by participants at FQHCs.MethodsThis study included 2,089 participants who completed one or more surveys via CATI and/or web-based platform between January 28, 2021 (when CATI was introduced) and January 27, 2022 (1 year since CATI introduction).Results and discussionResults show that among the 700 not-digitally ready participants, 51% used CATI; and of the 1,053 digitally ready participants, 30% used CATI for completing retention surveys. The remaining 336 participants had “Unknown/Missing” digital readiness of which, 34% used CATI. CATI allowed survey completion over the phone with a trained staff member who entered responses on the participant's behalf. Regardless of participants' digital readiness, median time to complete retention surveys was longer with CATI compared to web. CATI resulted in fewer skipped responses than the web-based platform highlighting better data completeness. These findings demonstrate the effectiveness of using CATI for improving response rates in online surveys, especially among populations that are digitally challenged. Analyses provide insights for NIH, healthcare providers, and researchers on the adoption of virtual tools for data collection, telehealth, telemedicine, or patient portals by digitally challenged groups even when in-person assistance continues to remain as an option. It also provides insights on the investment of staff time and support required for virtual administration of tools for health data collection.

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The Impact of COVID-19 on the All of Us Research Program

Cited by 9 publications

References 6 publications

Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program

Rethinking Data Collection Methods During the Pandemic: Development and Implementation of CATI for the All of Us Research Program

Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program

Understanding the use of CATI and web-based data collection methods during the pandemic among digitally challenged groups at FQHCs: data from the All of Us Research Program

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