RESUMEN
Introduction: The 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. Methods: This 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 discussion: Results 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.
RESUMEN
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.