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

Abstract

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.

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

“…Digital readiness was defined by access to home-based or other internet-accessing devices (computers, tablets, mobile phones, and other devices) and comfort level using such devices ( 6 ). Responses to the following three multiple-choice MCM technology access questions were utilized to define digital readiness: Do you have access to a computer, tablet, or mobile phone at home?…”

“…Participants that completed one or more of the aforementioned retention surveys between January 28, 2021 and January 27, 2022 and responded to the three MCM questions during enrollment were used to create the analytical data set. Variables corresponding to digital readiness disposition, mode of survey completion, time to complete, level of FQHC staff assistance (CHCI participants only) were available, as described below: Digital Readiness Status from MCM Data ( 6 ) Digitally Ready Participants: Participants who responded with a “Yes” or “Intermittent” to Questions 1 and 2, and “Very comfortable,” “Somewhat comfortable,” or “Neutral” to Question 3 were categorized as digitally ready . Not-Digitally Ready Participants: Participants who responded with a “No” to Questions 1 or 2 or “Somewhat uncomfortable” or “Not at all comfortable” to Question 3 were categorized as not digitally ready .…”

“…Digital Readiness Status from MCM Data ( 6 ) Digitally Ready Participants: Participants who responded with a “Yes” or “Intermittent” to Questions 1 and 2, and “Very comfortable,” “Somewhat comfortable,” or “Neutral” to Question 3 were categorized as digitally ready . Not-Digitally Ready Participants: Participants who responded with a “No” to Questions 1 or 2 or “Somewhat uncomfortable” or “Not at all comfortable” to Question 3 were categorized as not digitally ready .…”

“…• Digital Readiness Status from MCM Data (6) ○ Digitally Ready Participants: Participants who responded with a "Yes" or "Intermittent" to Questions 1 and 2, and "Very comfortable," "Somewhat comfortable," or "Neutral" to Question 3 were categorized as digitally ready.…”

“…Therefore, digital readiness plays a key role in the FQHC All of Us team's ability to enroll and retain participants in the Program. Previous research utilizing a pre-pandemic sample of 2,791 FQHC participants showed that digital readiness is associated with younger age, higher education and income, and gender identity, with females being more likely to be digitally ready ( 6 ). Digitally ready participants also had 27% higher odds of completing Program activities than those not digitally ready ( 6 ).…”