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

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          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.

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          Most cited references70

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          Beyond the Turk: Alternative platforms for crowdsourcing behavioral research

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            Prolific.ac—A subject pool for online experiments

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              The “All of Us” Research Program

              (2019)
              Knowledge gained from observational cohort studies has dramatically advanced the prevention and treatment of diseases. Many of these cohorts, however, are small, lack diversity, or do not provide comprehensive phenotype data. The All of Us Research Program plans to enroll a diverse group of at least 1 million persons in the United States in order to accelerate biomedical research and improve health. The program aims to make the research results accessible to participants, and it is developing new approaches to generate, access, and make data broadly available to approved researchers. All of Us opened for enrollment in May 2018 and currently enrolls participants 18 years of age or older from a network of more than 340 recruitment sites. Elements of the program protocol include health questionnaires, electronic health records (EHRs), physical measurements, the use of digital health technology, and the collection and analysis of biospecimens. As of July 2019, more than 175,000 participants had contributed biospecimens. More than 80% of these participants are from groups that have been historically underrepresented in biomedical research. EHR data on more than 112,000 participants from 34 sites have been collected. The All of Us data repository should permit researchers to take into account individual differences in lifestyle, socioeconomic factors, environment, and biologic characteristics in order to advance precision diagnosis, prevention, and treatment.
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                Author and article information

                Contributors
                Journal
                JMIR Form Res
                JMIR Form Res
                JFR
                JMIR Formative Research
                JMIR Publications (Toronto, Canada )
                2561-326X
                November 2022
                14 November 2022
                : 6
                : 11
                : e40765
                Affiliations
                [1 ] Krembil Centre for Neuroinformatics, Centre for Addiction and Mental Health Toronto, ON Canada
                [2 ] Department of Psychiatry University of Washington Seattle, WA United States
                [3 ] Depression Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School Boston, MA United States
                [4 ] Department of Psychiatry, University of Toronto Toronto, ON Canada
                [5 ] Vector Institute for Artificial Intelligence Toronto, ON Canada
                [6 ] Kings College London London United Kingdom
                [7 ] Department of Biomedical Informatics and Medical Education, University of Washington Seattle, WA United States
                Author notes
                Corresponding Author: Abhishek Pratap Abhishek.Pratap@ 123456camh.ca
                Author information
                https://orcid.org/0000-0001-6588-8192
                https://orcid.org/0000-0002-3784-9556
                https://orcid.org/0000-0003-2410-0287
                https://orcid.org/0000-0002-1359-5643
                https://orcid.org/0000-0002-6879-3268
                https://orcid.org/0000-0003-2658-9020
                https://orcid.org/0000-0003-0670-3412
                https://orcid.org/0000-0002-1683-8241
                https://orcid.org/0000-0001-5971-6319
                https://orcid.org/0000-0002-5289-6932
                Article
                v6i11e40765
                10.2196/40765
                9706389
                36374539
                2158a2b7-5d67-41e4-9330-663e246f480a
                ©Sophia Xueying Li, Ramzi Halabi, Rahavi Selvarajan, Molly Woerner, Isabell Griffith Fillipo, Sreya Banerjee, Brittany Mosser, Felipe Jain, Patricia Areán, Abhishek Pratap. Originally published in JMIR Formative Research (https://formative.jmir.org), 14.11.2022.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.

                History
                : 5 July 2022
                : 2 August 2022
                : 2 September 2022
                : 5 October 2022
                Categories
                Original Paper
                Original Paper

                participant recruitment,participant retention,decentralized studies,active and passive data collection,retention,adherence,compliance,engagement,smartphone,mobile health,mhealth,sensor data,clinical research,data sharing,recruitment,mobile phone

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