Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study

Abstract

Background Failure to find and attract clinical trial participants remains a persistent barrier to clinical research. Researchers increasingly complement recruitment methods with social media–based methods. We hypothesized that user-generated data from cancer survivors and their family members and friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors for cancer trials. Objective This pilot study aims to examine the feasibility of using user-reported health data from cancer survivors and family members and friends on Twitter in Los Angeles (LA) County to enhance clinical trial recruitment. We focus on 6 cancer conditions (breast cancer, colon cancer, kidney cancer, lymphoma, lung cancer, and prostate cancer). Methods The social media intervention involved monitoring cancer-specific posts about the 6 cancer conditions by Twitter users in LA County to identify cancer survivors and their family members and friends and contacting eligible Twitter users with information about open cancer trials at the University of Southern California (USC) Norris Comprehensive Cancer Center. We reviewed both retrospective and prospective data published by Twitter users in LA County between July 28, 2017, and November 29, 2018. The study enrolled 124 open clinical trials at USC Norris. We used descriptive statistics to report the proportion of Twitter users who were identified, engaged, and enrolled. Results We analyzed 107,424 Twitter posts in English by 25,032 unique Twitter users in LA County for the 6 cancer conditions. We identified and contacted 1.73% (434/25,032) of eligible Twitter users (127/434, 29.3% cancer survivors; 305/434, 70.3% family members and friends; and 2/434, 0.5% Twitter users were excluded). Of them, 51.4% (223/434) were female and approximately one-third were male. About one-fifth were people of color, whereas most of them were White. Approximately one-fifth (85/434, 19.6%) engaged with the outreach messages (cancer survivors: 33/85, 38% and family members and friends: 52/85, 61%). Of those who engaged with the messages, one-fourth were male, the majority were female, and approximately one-fifth were people of color, whereas the majority were White. Approximately 12% (10/85) of the contacted users requested more information and 40% (4/10) set up a prescreening. Two eligible candidates were transferred to USC Norris for further screening, but neither was enrolled. Conclusions Our findings demonstrate the potential of identifying and engaging cancer survivors and their family members and friends on Twitter. Optimization of downstream recruitment efforts such as screening for digital populations on social media may be required. Future research could test the feasibility of the approach for other diseases, locations, languages, social media platforms, and types of research involvement (eg, survey research). Computer science methods could help to scale up the analysis of larger data sets to support more rigorous testing of the intervention. Trial Registration ClinicalTrials.gov NCT03408561; https://clinicaltrials.gov/ct2/show/NCT03408561

Perspectives and Experiences of Patients With Thyroid Cancer at a Global Level: Retrospective Descriptive Study of Twitter Data

“…Many researchers have used the Twitter platform for both enrollment and intervention [ 2 , 13 , 14 ]. Twitter is indeed unique in its infrastructure and approach to data sharing.…”