Using social media to crowdsource collection of urine samples during a national pandemic

Abstract

The COVID-19 pandemic and subsequent lockdown had a substantial impact on normal research operations. Researchers needed to adapt their methods to engage at-home participants. One method is crowdsourcing, in which researchers use social media to recruit participants, gather data, and collect samples. We utilized this method to develop a diagnostic test for Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). Participants were recruited via posts on popular social-media platforms, and enrolled via a website. Participants received and returned a mail kit containing bladder symptom surveys and a urine sample cup containing room-temperature preservative. Using this method, we collected 1254 IC/BPS and control samples in 3 months from all 50 United States. Our data demonstrate that crowdsourcing is a viable alternative to traditional research, with the ability to reach a broad patient population rapidly. Crowdsourcing is a powerful tool for at-home participation in research, particularly during the lockdown caused by the COVID-19 pandemic.

A Cost, Time, and Demographic Analysis of Participant Recruitment and Urine Sample Collection Through Social Media Optimization

“…There was a 2-week average turnaround time from initial online enrollment to sample return. 5 The rate of enrollment and return tapered down slowly over time but peaked slightly at weeks 8 and 10 when the ICA sent reminder emails to participants. Enrollment at the clinical sites was at a steady rate with no major spikes or drops.…”

“…We created a research study website that contained a study background, a link to the enrollment survey, shipping information videos, and frequently asked questions. 5 A Health Insurance Portability and Accountability Act-compliant survey was created using SurveyMonkey to screen and enroll participants and collect the addresses to which a urine collection kit could be shipped.…”

“…The study was also directly advertised using Google Ads, with the keywords “IC,” “IC/BPS,” “interstitial cystitis,” and “urology study.” Finally, search engine optimization of the study webpage allowed users to easily find and directly signup for the study, as well as share it through email or social media applications. 5 Once a potential IC/BPS participant had completed the enrollment survey, met enrollment criteria, and consented to participate, an at-home collection kit was prepared and shipped to them. Participants were instructed to find 2 other sample donors of similar age without a bladder disease health history to serve as control participants.…”

“…1). 5 Figure 1. Social media advertisement created and posted by interstitial cystitis (IC)/bladder pain syndrome support group.…”

“…Disease symptoms surveys included the Interstitial Cystitis Symptom/Problem Index; the Overactive Bladder questionnaire; the Pelvic Pain, Urgency, and Frequency questionnaire; and the Visual Analogue Scale. 5…”