Research Participants' Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort.

Erika Rees-Punia,Asher Beckwitt,Corinne R Leach,Alpa V Patel,Tenbroeck G Smith,Susan M Gapstur

doi:10.2196/18556

Abstract

BackgroundEpidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants.ObjectiveThe aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals.MethodsCPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes.ResultsParticipants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices.ConclusionsIn addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

Highlights

BackgroundA common, contemporary application of health information technology is the electronic patient portal [1]
Similar to the various benefits of patient portals, research participant portals could facilitate the collection of patient-generated health data (PGHD) and data from wearable technologies, provide a way to administer targeted surveys to different subsets of the study population, collect electronic health data, and save costs and time associated with printing and mailing logistics [11]
Sample Characteristics A total of 11 focus groups were conducted in November 2018, with 7 virtual focus groups (2-8 participants each) and 4 on-site (6-8 participants each)

Summary

Introduction

A common, contemporary application of health information technology is the electronic patient portal [1]. Patient portals have the potential to facilitate the integration of new technologies for remote monitoring, such as home blood pressure monitors, ecological momentary assessment apps, and other wearable devices (eg, activity trackers and heart rate monitors) at a lower cost [6]. Electronic portals have been leveraged to survey and engage participants in research studies. Similar to the various benefits of patient portals, research participant portals could facilitate the collection of PGHD and data from wearable technologies, provide a way to administer targeted surveys to different subsets of the study population, collect electronic health data, and save costs and time associated with printing and mailing logistics [11]. Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. Little is known about the acceptability of portal use by research participants

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Discussion

Conclusion