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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Aug 14, 2020
Date Accepted: Apr 7, 2021

The final, peer-reviewed published version of this preprint can be found here:

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

Nkyekyer J, Clifford SA, Mensah FK, Wang Y, Chiu L, Wake M

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

J Med Internet Res 2021;23(5):e23499

DOI: 10.2196/23499

PMID: 33988509

PMCID: 8164122

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

  • Joanna Nkyekyer; 
  • Susan A Clifford; 
  • Fiona K Mensah; 
  • Yichao Wang; 
  • Lauren Chiu; 
  • Melissa Wake

ABSTRACT

Background:

Many current research needs can only be addressed with 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 of maintaining contact is via a digital delivery mode.

Objective:

This is an overview of systematic reviews and meta-analyses to assess strategies for maximising rates of participant engagement and retention in large-scale digital contact cohort studies.

Methods:

A rapid review method was used. PubMed and OvidMedline databases were searched spanning January 2012 to December 2019. Articles were screened for relevance based on preset inclusion and exclusion criteria. The methodological quality of included reviews was assessed using the Measurement Tool to Assess Systematic Reviews (AMSTAR 2). The authors derived classifications from the systematic reviews and conduced a narrative synthesis of the data. We explored objective evidence supporting design features that aid engagement and the effectiveness of e-Engagement/participation/retention promoting strategies.

Results:

Our literature searches yielded 19 eligible reviews published 2012-2019. Contributing reviews were conducted in clinical and research settings. Few of the relevant experimental studies were actually conducted within very large cohorts. Email/Short Message Service (SMS) reminders, SMS/voice notifications and incentives were the most commonly used design features to engage and retain participants. Digital reminders increased medication adherence, with an approximate doubling of the odds of patients achieving adherence to their medication regimens. This increase translates into adherence rates improving from 50% to 67.8% (or an absolute increase of 17.8%). Multiple SMS notifications significantly improved (19% increase) clinic attendance over a single notification. For parental outcomes, engagement-facilitation interventions influenced uptake and behavior change, including video feedback, goal setting, 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 personalised way. Self-monitoring and personalised feedback seemed to favor perinatal and postpartum women. Overall, 12 out of 19 reviews (63%) reported on the effectiveness of e-Engagement/participation promoting strategies.

Conclusions:

This review adds to the growing experimental literature on methods to optimise engagement and participation in digital contact studies that may be applicable to large-scale cohort studies. Most reviews show e-Engagement/participation promoting strategies are effective which is promising. However, these reviews canvassed relatively few experimentally-tested strategies, suggesting that alternative strategies have not been the subject of reviews. The reviews also revealed a dearth of experimental evidence actually generated within very large digital contact cohort studies themselves; this may reflect the small number of such studies worldwide. Thus, very large studies may themselves need to build in experimental opportunities to test engagement and retention approaches to enhance the success of their own, as well as other, large digital contact studies. Clinical Trial: Prospero Registration Number: CRD42020155430


 Citation

Please cite as:

Nkyekyer J, Clifford SA, Mensah FK, Wang Y, Chiu L, Wake M

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

J Med Internet Res 2021;23(5):e23499

DOI: 10.2196/23499

PMID: 33988509

PMCID: 8164122

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