Lessons learned from the MOMENT study on how to recruit and retain a target population online, across borders, and with automated remote data collection.

Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE

Original Publication: San Francisco, CA : Public Library of Science

Data Collection*/methods ; Social Media*; Humans ; Italy ; Female ; Male ; United States ; Netherlands ; Sweden ; Surveys and Questionnaires ; Patient Selection ; Adult ; Middle Aged

Increasingly, studies use social media to recruit, enroll, and collect data from participants. This introduces a threat to data integrity: efforts to produce fraudulent data to receive participant compensation, e.g., gift cards. MOMENT is an online symptom-monitoring and self-care study that implemented safeguards to protect data integrity. Facebook, Twitter, and patient organizations were used to recruit participants with chronic health conditions in four countries (USA, Italy, The Netherlands, Sweden). Links to the REDCap baseline survey were posted to social media accounts. The initial study launch, where participants completed the baseline survey and were automatically re-directed to the LifeData ecological momentary assessment app, was overwhelmed with fraudulent responses. In response, safeguards (e.g., reCAPTCHA, attention checks) were implemented and baseline data was manually inspected prior to LifeData enrollment. The initial launch resulted in 411 responses in 48 hours, 265 of which (64.5%) successfully registered for the LifeData app and were considered enrolled. Ninety-nine percent of these were determined to be fraudulent. Following implementation of safeguards, the re-launch yielded 147 completed baselines in 3.5 months. Eighteen cases (12.2%) were found fraudulent and not invited to enroll. Most fraudulent cases in the re-launch (15 of 18) were identified by a single attention check question. In total, 96.1% of fraudulent responses were to the USA-based survey. Data integrity safeguards are necessary for research studies that recruit online and should be reported in manuscripts. Three safeguard strategies were effective in preventing and removing most of the fraudulent data in the MOMENT study. Additional strategies were also used and may be necessary in other contexts.
Competing Interests: The authors have declared that no competing interests exist.
(Copyright: © 2024 Belfiglio et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Am J Bioeth. 2012;12(2):1-10. (PMID: 22304506)
Psychol Med. 1986 Feb;16(1):1-7. (PMID: 3961035)
Internet Interv. 2021 Jan 07;23:100362. (PMID: 33489782)
Qual Quant. 2022;56(4):2841-2852. (PMID: 34629553)
Contemp Clin Trials Commun. 2020 Jun 17;19:100590. (PMID: 32637722)
J Med Internet Res. 2020 Jun 5;22(6):e17554. (PMID: 32501274)
Fam Pract. 2021 Sep 25;38(5):699-702. (PMID: 34213547)
J Pediatr Health Care. 2023 May-Jun;37(3):328-332. (PMID: 36717299)
ERJ Open Res. 2019 Apr 08;5(2):. (PMID: 30972351)
J Biomed Inform. 2019 Jul;95:103208. (PMID: 31078660)
J Med Internet Res. 2018 Oct 30;20(10):e12094. (PMID: 30377139)
J Law Med Ethics. 2015 Spring;43(1):116-33. (PMID: 25846043)
J Biomed Inform. 2009 Apr;42(2):377-81. (PMID: 18929686)
J Med Internet Res. 2017 Aug 28;19(8):e290. (PMID: 28851679)
J Med Internet Res. 2016 Nov 7;18(11):e286. (PMID: 27821383)
J Med Internet Res. 2020 Oct 7;22(10):e23021. (PMID: 33026360)
Nurs Res. 2019 Nov/Dec;68(6):423-432. (PMID: 31693547)
Yale J Health Policy Law Ethics. 2017 Winter;17(1):61-141. (PMID: 29249912)
J Med Internet Res. 2020 Oct 26;22(10):e22810. (PMID: 33104015)

Date Created: 20240916 Date Completed: 20240916 Latest Revision: 20240921

20240921

PMC11404800

10.1371/journal.pone.0307440

39283903