Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

Abstract Digital technologies such as smartphones are transforming the way scientists conduct biomedical research. Several remotely conducted studies have recruited thousands of participants over a span of a few months allowing researchers to collect real-world data at scale and at a fraction of the...

Full description

Bibliographic Details
Main Authors: Abhishek Pratap, Elias Chaibub Neto, Phil Snyder, Carl Stepnowsky, Noémie Elhadad, Daniel Grant, Matthew H. Mohebbi, Sean Mooney, Christine Suver, John Wilbanks, Lara Mangravite, Patrick J. Heagerty, Pat Areán, Larsson Omberg
Format: Article
Language:English
Published: Nature Portfolio 2020-02-01
Series:npj Digital Medicine
Online Access:https://doi.org/10.1038/s41746-020-0224-8
_version_ 1797643133637361664
author Abhishek Pratap
Elias Chaibub Neto
Phil Snyder
Carl Stepnowsky
Noémie Elhadad
Daniel Grant
Matthew H. Mohebbi
Sean Mooney
Christine Suver
John Wilbanks
Lara Mangravite
Patrick J. Heagerty
Pat Areán
Larsson Omberg
author_facet Abhishek Pratap
Elias Chaibub Neto
Phil Snyder
Carl Stepnowsky
Noémie Elhadad
Daniel Grant
Matthew H. Mohebbi
Sean Mooney
Christine Suver
John Wilbanks
Lara Mangravite
Patrick J. Heagerty
Pat Areán
Larsson Omberg
author_sort Abhishek Pratap
collection DOAJ
description Abstract Digital technologies such as smartphones are transforming the way scientists conduct biomedical research. Several remotely conducted studies have recruited thousands of participants over a span of a few months allowing researchers to collect real-world data at scale and at a fraction of the cost of traditional research. Unfortunately, remote studies have been hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of outcomes. We report the findings regarding recruitment and retention from eight remote digital health studies conducted between 2014–2019 that provided individual-level study-app usage data from more than 100,000 participants completing nearly 3.5 million remote health evaluations over cumulative participation of 850,000 days. Median participant retention across eight studies varied widely from 2–26 days (median across all studies = 5.5 days). Survival analysis revealed several factors significantly associated with increase in participant retention time, including (i) referral by a clinician to the study (increase of 40 days in median retention time); (ii) compensation for participation (increase of 22 days, 1 study); (iii) having the clinical condition of interest in the study (increase of 7 days compared with controls); and (iv) older age (increase of 4 days). Additionally, four distinct patterns of daily app usage behavior were identified by unsupervised clustering, which were also associated with participant demographics. Most studies were not able to recruit a sample that was representative of the race/ethnicity or geographical diversity of the US. Together these findings can help inform recruitment and retention strategies to enable equitable participation of populations in future digital health research.
first_indexed 2024-03-11T14:10:16Z
format Article
id doaj.art-86d1232336c940b38797a6044e476fd1
institution Directory Open Access Journal
issn 2398-6352
language English
last_indexed 2024-03-11T14:10:16Z
publishDate 2020-02-01
publisher Nature Portfolio
record_format Article
series npj Digital Medicine
spelling doaj.art-86d1232336c940b38797a6044e476fd12023-11-02T00:11:29ZengNature Portfolionpj Digital Medicine2398-63522020-02-013111010.1038/s41746-020-0224-8Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participantsAbhishek Pratap0Elias Chaibub Neto1Phil Snyder2Carl Stepnowsky3Noémie Elhadad4Daniel Grant5Matthew H. Mohebbi6Sean Mooney7Christine Suver8John Wilbanks9Lara Mangravite10Patrick J. Heagerty11Pat Areán12Larsson Omberg13Sage BionetworksSage BionetworksSage BionetworksUniversity of CaliforniaColumbia UniversityNovartis Pharmaceutical CorporationGoodRxDepartment of Biomedical Informatics and Medical Education, University of WashingtonSage BionetworksSage BionetworksSage BionetworksDepartment of Biostatistics, University of WashingtonDepartment of Psychiatry & Behavioral Sciences, University of WashingtonSage BionetworksAbstract Digital technologies such as smartphones are transforming the way scientists conduct biomedical research. Several remotely conducted studies have recruited thousands of participants over a span of a few months allowing researchers to collect real-world data at scale and at a fraction of the cost of traditional research. Unfortunately, remote studies have been hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of outcomes. We report the findings regarding recruitment and retention from eight remote digital health studies conducted between 2014–2019 that provided individual-level study-app usage data from more than 100,000 participants completing nearly 3.5 million remote health evaluations over cumulative participation of 850,000 days. Median participant retention across eight studies varied widely from 2–26 days (median across all studies = 5.5 days). Survival analysis revealed several factors significantly associated with increase in participant retention time, including (i) referral by a clinician to the study (increase of 40 days in median retention time); (ii) compensation for participation (increase of 22 days, 1 study); (iii) having the clinical condition of interest in the study (increase of 7 days compared with controls); and (iv) older age (increase of 4 days). Additionally, four distinct patterns of daily app usage behavior were identified by unsupervised clustering, which were also associated with participant demographics. Most studies were not able to recruit a sample that was representative of the race/ethnicity or geographical diversity of the US. Together these findings can help inform recruitment and retention strategies to enable equitable participation of populations in future digital health research.https://doi.org/10.1038/s41746-020-0224-8
spellingShingle Abhishek Pratap
Elias Chaibub Neto
Phil Snyder
Carl Stepnowsky
Noémie Elhadad
Daniel Grant
Matthew H. Mohebbi
Sean Mooney
Christine Suver
John Wilbanks
Lara Mangravite
Patrick J. Heagerty
Pat Areán
Larsson Omberg
Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
npj Digital Medicine
title Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
title_full Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
title_fullStr Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
title_full_unstemmed Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
title_short Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants
title_sort indicators of retention in remote digital health studies a cross study evaluation of 100 000 participants
url https://doi.org/10.1038/s41746-020-0224-8
work_keys_str_mv AT abhishekpratap indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT eliaschaibubneto indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT philsnyder indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT carlstepnowsky indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT noemieelhadad indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT danielgrant indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT matthewhmohebbi indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT seanmooney indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT christinesuver indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT johnwilbanks indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT laramangravite indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT patrickjheagerty indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT patarean indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants
AT larssonomberg indicatorsofretentioninremotedigitalhealthstudiesacrossstudyevaluationof100000participants