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

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 Sta...

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Autores principales: Kini, Soumya, Duluk, Dave, Weinstein, Joshua
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10133694/
https://www.ncbi.nlm.nih.gov/pubmed/37124163
http://dx.doi.org/10.3389/fdgth.2022.1082098
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author Kini, Soumya
Duluk, Dave
Weinstein, Joshua
author_facet Kini, Soumya
Duluk, Dave
Weinstein, Joshua
author_sort Kini, Soumya
collection PubMed
description 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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spelling pubmed-101336942023-04-28 Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program Kini, Soumya Duluk, Dave Weinstein, Joshua Front Digit Health Digital Health 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. Frontiers Media S.A. 2023-04-13 /pmc/articles/PMC10133694/ /pubmed/37124163 http://dx.doi.org/10.3389/fdgth.2022.1082098 Text en © 2023 Kini, Duluk and Weinstein. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Digital Health
Kini, Soumya
Duluk, Dave
Weinstein, Joshua
Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title_full Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title_fullStr Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title_full_unstemmed Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title_short Modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: Data from the All of Us research program
title_sort modeling the impact of digital readiness in recruiting and sustaining underrepresented groups: data from the all of us research program
topic Digital Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10133694/
https://www.ncbi.nlm.nih.gov/pubmed/37124163
http://dx.doi.org/10.3389/fdgth.2022.1082098
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