An Alternative to the Light Touch Digital Health Remote Study: The Stress and Recovery in Frontline COVID-19 Health Care Workers Study

Abstract

Background Several app-based studies share similar characteristics of a light touch approach that recruit, enroll, and onboard via a smartphone app and attempt to minimize burden through low-friction active study tasks while emphasizing the collection of passive data with minimal human contact. However, engagement is a common challenge across these studies, reporting low retention and adherence. Objective This study aims to describe an alternative to a light touch digital health study that involved a participant-centric design including high friction app-based assessments, semicontinuous passive data from wearable sensors, and a digital engagement strategy centered on providing knowledge and support to participants. Methods The Stress and Recovery in Frontline COVID-19 Health Care Workers Study included US frontline health care workers followed between May and November 2020. The study comprised 3 main components: (1) active and passive assessments of stress and symptoms from a smartphone app, (2) objective measured assessments of acute stress from wearable sensors, and (3) a participant codriven engagement strategy that centered on providing knowledge and support to participants. The daily participant time commitment was an average of 10 to 15 minutes. Retention and adherence are described both quantitatively and qualitatively. Results A total of 365 participants enrolled and started the study, and 81.0% (n=297) of them completed the study for a total study duration of 4 months. Average wearable sensor use was 90.6% days of total study duration. App-based daily, weekly, and every other week surveys were completed on average 69.18%, 68.37%, and 72.86% of the time, respectively. Conclusions This study found evidence for the feasibility and acceptability of a participant-centric digital health study approach that involved building trust with participants and providing support through regular phone check-ins. In addition to high retention and adherence, the collection of large volumes of objective measured data alongside contextual self-reported subjective data was able to be collected, which is often missing from light touch digital health studies. Trial Registration ClinicalTrials.gov NCT04713111; https://clinicaltrials.gov/ct2/show/NCT04713111

Long-term participant retention and engagement patterns in an app and wearable-based multinational remote digital depression study

“…Second, co-designing study protocols and apps with representative patient advisory boards can help optimize the acceptability of the technology 40 , 41 . Third, applying “Human-in-the-loop” 42 , 43 approaches can help the timely resolution of problems that are encountered by participants and may reduce the risk of disengaging from the study. Finally, the present study showed that passive data gathered from wearables has greater contiguity and participant retention over the long term.…”

“…Although participants were not financially reimbursed for providing data via study apps and the wearable, participants received £15/€20 for enrollment, £5/€10 for clinical assessments (REDCap surveys) every 3 months, and £10/€10 for every additional qualitative interview completed 10 . Furthermore, the “Human-in-the-loop” 43 approach was used during the observation period. The research team contacted participants for various reasons, such as reminding clinical assessments, technical issues (e.g., Fitbit broken, problems in study apps, and phone issues), and congratulating participants on reaching key study milestones (e.g., one year in the study).…”

Recruitment and Retention in Remote Research: Learnings From a Large, Decentralized Real-world Study

“…However, despite the promise of decentralized health research, several challenges related to the representation and inclusiveness of recruitment and the retention of target populations have surfaced [ 21 , 24 , 25 ], resulting in sparse, unbalanced, and nonrepresentative real-world data collection [ 21 ]. Typically, decentralized studies recruit from various web-based sources such as social media (Facebook [ 26 ] and Reddit [ 27 ]), crowdsourced platforms (Prolific [ 28 ]; Amazon Mechanical Turk, MTurk [ 29 ]; Centiment [ 30 ]; and CloudResearch [ 31 ]), and partnerships with patient registries or advocacy groups [ 32 , 33 ].…”

“…Although these recruitment channels have shown the potential to reach and recruit large populations remotely [ 34 - 36 ], the long-term and uniform retention of remote participants has been challenging. Recent findings show that retention rates vary from 1% to 50% [ 24 ], with monetary incentives being able to significantly improve long-term retention [ 10 ]. With large-scale open recruitment approaches, including the use of financial incentives, the risk of enrolling gamers or malicious actors increases [ 37 ].…”

Long-term Participant Retention and Engagement Patterns in an App and Wearable-based Multinational Remote Digital Depression Study

“…Second, co-designing study protocols and apps with representative patient advisory boards can help optimize the acceptability of the technology 40,41 . Third, applying "Human-in-the-loop" 42,43 approaches can help the timely resolution of problems that are encountered by participants and may reduce the risk of disengaging from the study. Finally, the present Table 2.…”