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

Health care Medical research

Journal

NPJ digital medicine
ISSN: 2398-6352
Titre abrégé: NPJ Digit Med
Pays: England
ID NLM: 101731738

Informations de publication

Date de publication:
2020
Historique:
received: 01 10 2019
accepted: 17 01 2020
entrez: 5 3 2020
pubmed: 5 3 2020
medline: 5 3 2020
Statut: epublish

Résumé

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.

Identifiants

pubmed: 32128451
doi: 10.1038/s41746-020-0224-8
pii: 224
pmc: PMC7026051
doi:

Types de publication

Journal Article

Langues

eng

Pagination

21

Subventions

Organisme : NLM NIH HHS
ID : R01 LM013043
Pays : United States
Organisme : NIMH NIH HHS
ID : R34 MH100466
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR002319
Pays : United States

Informations de copyright

© The Author(s) 2020.

Déclaration de conflit d'intérêts

Competing interestsThe authors declare no competing interests.

Références

Sci Data. 2019 Apr 11;6(1):24
pubmed: 30975992
JAMA Netw Open. 2019 Nov 1;2(11):e1915717
pubmed: 31747031
Rev Bras Epidemiol. 2014 Dec;17(4):842-51
pubmed: 25388485
Transl Behav Med. 2013 Sep;3(3):271-6
pubmed: 24073178
BMJ Innov. 2016 Jan;2(1):14-21
pubmed: 27019745
JMIR Mhealth Uhealth. 2017 Aug 30;5(8):e126
pubmed: 28855147
Nat Biotechnol. 2016 Apr;34(4):377-9
pubmed: 26939011
Sci Data. 2017 Feb 14;4:170005
pubmed: 28195576
Acad Med. 2017 Feb;92(2):157-160
pubmed: 27119325
J Neurol Neurosurg Psychiatry. 2004 Mar;75(3):382-7
pubmed: 14966152
Clin Transl Sci. 2014 Aug;7(4):342-6
pubmed: 25043853
Nat Biotechnol. 2018 Jul 6;36(7):561-562
pubmed: 29979664
J Med Internet Res. 2012 Nov 05;14(6):e150
pubmed: 23128775
JMIR Mhealth Uhealth. 2017 Jun 28;5(6):e87
pubmed: 28659258
Clin Epidemiol. 2019 Feb 11;11:169-184
pubmed: 30809104
N Engl J Med. 1999 Jul 15;341(3):198-203
pubmed: 10403861
PLoS Med. 2015 Dec 15;12(12):e1001918
pubmed: 26671224
JMIR Mhealth Uhealth. 2018 Sep 13;6(9):e177
pubmed: 30213779
Rheum Dis Clin North Am. 2019 May;45(2):159-172
pubmed: 30952390
Sci Data. 2016 Mar 03;3:160011
pubmed: 26938265
J Am Med Inform Assoc. 2004 Mar-Apr;11(2):129-40
pubmed: 14662803
J Med Internet Res. 2006 Sep 29;8(3):e20; author reply e21
pubmed: 17032636
Contemp Clin Trials. 2011 May;32(3):353-62
pubmed: 21276876
J Health Soc Policy. 2000;12(2):23-43
pubmed: 11184441
PLoS One. 2019 Apr 16;14(4):e0215468
pubmed: 30990860
Cancer. 2001 Jan 1;91(1 Suppl):233-6
pubmed: 11148585
Ann Behav Med. 2018 May 18;52(6):446-462
pubmed: 27663578
Contemp Clin Trials Commun. 2018 Aug 07;11:156-164
pubmed: 30112460
J Med Internet Res. 2018 Aug 09;20(8):e10130
pubmed: 30093372
BMJ. 2004 May 1;328(7447):1073
pubmed: 15117797
NPJ Parkinsons Dis. 2016 Mar 03;2:16006
pubmed: 28725694
J Med Internet Res. 2005 Mar 31;7(1):e11
pubmed: 15829473
J Clin Epidemiol. 2016 Dec;80:8-15
pubmed: 27498376
N Engl J Med. 2018 Feb 22;378(8):766-771
pubmed: 29466147
N Engl J Med. 2019 Sep 5;381(10):956-968
pubmed: 31483966
Contemp Clin Trials. 2014 Jul;38(2):190-7
pubmed: 24792229
NPJ Digit Med. 2018 Jan 15;1:20175
pubmed: 31304349
J Multidiscip Healthc. 2016 May 04;9:211-7
pubmed: 27217764
JMIR Mhealth Uhealth. 2017 Nov 01;5(11):e168
pubmed: 29092810
J Med Internet Res. 2015 Jan 30;17(1):e30
pubmed: 25639757
Sci Data. 2018 May 22;5:180096
pubmed: 29786695
Crit Care. 2004 Oct;8(5):389-94
pubmed: 15469602
BMJ. 2004 Jan 31;328(7434):265
pubmed: 14742346
JAMA Cardiol. 2017 Jan 1;2(1):67-76
pubmed: 27973671
Clin Pharmacol Ther. 2019 Jul;106(1):33-35
pubmed: 30883700
Am J Public Health. 2003 Oct;93(10):1655-71
pubmed: 14534218
BMJ. 2009 Nov 10;339:b4471
pubmed: 19903981
PeerJ. 2018 May 31;6:e4874
pubmed: 29876147
Otolaryngol Head Neck Surg. 2010 Sep;143(3):331-6
pubmed: 20723767
Contemp Clin Trials. 2015 Nov;45(Pt A):34-40
pubmed: 26188163
BMC Med Inform Decis Mak. 2016 Sep 15;16(1):120
pubmed: 27630020
Digit Biomark. 2018 Jan 31;2(1):11-30
pubmed: 29938250
JAMA. 2017 May 16;317(19):1976-1992
pubmed: 28510678
N Engl J Med. 2019 Aug 15;381(7):668-676
pubmed: 31412182
Sci Transl Med. 2015 Apr 15;7(283):283rv3
pubmed: 25877894
Perspect Health Inf Manag. 2011 Jan 01;8:1f
pubmed: 21307989
BMJ. 2008 Oct 23;337:a1786
pubmed: 18948344
JAMA. 1998 Jan 21;279(3):222-5
pubmed: 9438743
J Med Ethics. 2004 Jun;30(3):293-8
pubmed: 15173366
J Med Internet Res. 2004 Dec 22;6(4):e46
pubmed: 15631970
Nat Biotechnol. 2017 Apr;35(4):354-362
pubmed: 28288104
Int J Epidemiol. 1999 Feb;28(1):1-9
pubmed: 10195657

Auteurs

Abhishek Pratap (A)

1Sage Bionetworks, Seattle, WA USA.
2Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA USA.

Elias Chaibub Neto (EC)

1Sage Bionetworks, Seattle, WA USA.

Phil Snyder (P)

1Sage Bionetworks, Seattle, WA USA.

Carl Stepnowsky (C)

3University of California, San Diego, CA USA.
American Sleep Apnea Association, Washington, DC USA.

Noémie Elhadad (N)

5Columbia University, New York, NY USA.

Daniel Grant (D)

6Novartis Pharmaceutical Corporation, East Hanover, NJ USA.

Matthew H Mohebbi (MH)

GoodRx, Santa Monica, CA USA.

Sean Mooney (S)

2Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA USA.

Christine Suver (C)

1Sage Bionetworks, Seattle, WA USA.

John Wilbanks (J)

1Sage Bionetworks, Seattle, WA USA.

Lara Mangravite (L)

1Sage Bionetworks, Seattle, WA USA.

Patrick J Heagerty (PJ)

8Department of Biostatistics, University of Washington, Seattle, WA USA.

Pat Areán (P)

9Department of Psychiatry & Behavioral Sciences, University of Washington, Seattle, WA USA.

Larsson Omberg (L)

1Sage Bionetworks, Seattle, WA USA.

Classifications MeSH