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

Abstract

Background Smartphones are increasingly used in health research. They provide a continuous connection between participants and researchers to monitor long-term health trajectories of large populations at a fraction of the cost of traditional research studies. However, despite the potential of using smartphones in remote research, there is an urgent need to develop effective strategies to reach, recruit, and retain the target populations in a representative and equitable manner. Objective We aimed to investigate the impact of combining different recruitment and incentive distribution approaches used in remote research on cohort characteristics and long-term retention. The real-world factors significantly impacting active and passive data collection were also evaluated. Methods We conducted a secondary data analysis of participant recruitment and retention using data from a large remote observation study aimed at understanding real-world factors linked to cold, influenza, and the impact of traumatic brain injury on daily functioning. We conducted recruitment in 2 phases between March 15, 2020, and January 4, 2022. Over 10,000 smartphone owners in the United States were recruited to provide 12 weeks of daily surveys and smartphone-based passive-sensing data. Using multivariate statistics, we investigated the potential impact of different recruitment and incentive distribution approaches on cohort characteristics. Survival analysis was used to assess the effects of sociodemographic characteristics on participant retention across the 2 recruitment phases. Associations between passive data-sharing patterns and demographic characteristics of the cohort were evaluated using logistic regression. Results We analyzed over 330,000 days of engagement data collected from 10,000 participants. Our key findings are as follows: first, the overall characteristics of participants recruited using digital advertisements on social media and news media differed significantly from those of participants recruited using crowdsourcing platforms (Prolific and Amazon Mechanical Turk; P<.001). Second, participant retention in the study varied significantly across study phases, recruitment sources, and socioeconomic and demographic factors (P<.001). Third, notable differences in passive data collection were associated with device type (Android vs iOS) and participants’ sociodemographic characteristics. Black or African American participants were significantly less likely to share passive sensor data streams than non-Hispanic White participants (odds ratio 0.44-0.49, 95% CI 0.35-0.61; P<.001). Fourth, participants were more likely to adhere to baseline surveys if the surveys were administered immediately after enrollment. Fifth, technical glitches could significantly impact real-world data collection in remote settings, which can severely impact generation of reliable evidence. Conclusions Our findings highlight several factors, such as recruitment platforms, incentive distribution frequency, the timing of baseline surveys, device heterogeneity, and technical glitches in data collection infrastructure, that could impact remote long-term data collection. Combined together, these empirical findings could help inform best practices for monitoring anomalies during real-world data collection and for recruiting and retaining target populations in a representative and equitable manner.

Racial and ethnic differences in the degree of participation and retention in a decentralized cohort study of COVID-19 immunization in patients with inflammatory bowel diseases

“…An evaluation of 24 traditional trials conducted by the National Drug Abuse Treatment Clinical Trials Network demonstrated no statistical differences in retention across racial and ethnic groups [ 17 ]. However, a more recent analysis of retention in a decentralized study demonstrated higher retention of non-Hispanic whites as compared to Black and Hispanic participants [ 18 ] consistent with our study’s findings. Taken together, this emerging literature regarding participant engagement and retention in decentralized studies suggests the need to develop and test targeted strategies to promote engagement and retention of minority study participants.…”

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

“…This finding is consistent with several previous engagement studies. 21,45,46 This study also demonstrated the feasibility of collecting active and passive data streams for long-term behavior monitoring. While there is growing interest amongst researchers in gathering behavioral data without having to rely on episodic in-clinic assessments that may be subject to recall bias 47 , there is limited empirical research quantifying the long-term participant engagement differences between active (surveys) and passive data streams (smartphones and wearables).…”

Feasibility study for a fully decentralized clinical trial in participants with functional constipation symptoms

“…The considerations comprehensively support the DCT design, as it enables study monitoring with little cost and can reflect real‐world clinical practices. In the same vein, DCT approaches have been observed in trials for atrial fibrillation, 12 Parkinson's disease, 29 and type 2 diabetes, 30 all of which satisfy the aforementioned features. The efficacy results in our study were comparable to those in the traditional clinical trial, suggesting the feasibility of a DCT design in functional constipation.…”

“…It is noteworthy that recruitment and data collection processes can be influenced by various unexpected factors, such as device heterogeneity 29 . Li et al 29 found that the device type of mobile phones (Android vs. iOS) substantially affected the data sharing patterns (e.g., providing barometer data) of participants in a study with 10,000 participants. In another study, the layout of the recruitment website influenced participant engagement and interest in the study 31 .…”