Maximizing Participant Engagement, Participation, and Retention in Cohort Studies Using Digital Methods: Rapid Review to Inform the Next Generation of Very Large Birth Cohorts

BACKGROUND: Many current research needs can only be addressed using very large cohorts. In such studies, traditional one-on-one phone, face-to-face, or paper-based engagement may not be feasible. The only realistic mechanism for maintaining engagement and participation at this scale is via digital methods. Given the substantial investment being made into very large birth cohort studies, evidence for optimal methods of participant engagement, participation, and retention over sustained periods without in-person contact from researchers is paramount. OBJECTIVE: This study aims to provide an overview of systematic reviews and meta-analyses evaluating alternative strategies for maximizing participant engagement and retention rates in large-scale studies using digital methods. METHODS: We used a rapid review method by searching PubMed and Ovid MEDLINE databases from January 2012 to December 2019. Studies evaluating at least 1 e-engagement, participation, or retention strategy were eligible. Articles were screened for relevance based on preset inclusion and exclusion criteria. The methodological quality of the included reviews was assessed using the AMSTAR-2 (Assessing the Methodological Quality of Systematic Reviews 2) measurement tool, and a narrative synthesis of the data was conducted. RESULTS: The literature search yielded 19 eligible reviews. Overall, 63% (n=12) of these reviews reported on the effectiveness of e-engagement or participation promotion strategies. These evaluations were generally not conducted within very large observational digital cohorts. Most of the contributing reviews included multipurpose cohort studies (with both observational and interventional elements) conducted in clinical and research settings. Email or SMS text message reminders, SMS text messages or voice notifications, and incentives were the most commonly used design features to engage and retain participants. For parental outcomes, engagement-facilitation interventions influenced uptake and behavior change, including video feedback, goal setting, and intensive human facilitation and support. Participant-stated preferences for content included new knowledge, reminders, solutions, and suggestions about health issues presented in a clear, short, and personalized way. Perinatal and postpartum women valued self-monitoring and personalized feedback. Digital reminders and multiple SMS text messages were specific strategies that were found to increase adherence to medication and clinic attendance, respectively. CONCLUSIONS: This review adds to the growing literature evaluating methods to optimize engagement and participation that may apply to large-scale studies using digital methods; it is promising that most e-engagement and participation promotion strategies appear to be effective. However, these reviews canvassed relatively few strategies, suggesting that few alternative strategies have been experimentally evaluated. The reviews also revealed a dearth of experimental evidence generated within very large observational digital cohort studies, which may reflect the small number of such studies worldwide. Thus, very large studies may need to proactively build in experimental opportunities to test engagement and retention approaches to enhance the success of their own and other large digital contact studies.