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


JMIR Res. 2021 26; 5 (11): e29958. doi: 10.2196 / 29958.


BACKGROUND: The inability to find and attract clinical trial participants remains a persistent barrier to clinical research. Researchers are increasingly supplementing recruiting methods with social media-based methods. We hypothesized that user-generated data of cancer survivors and their family and friends on the social network Twitter could be used to identify, involve, and recruit cancer survivors for cancer trials.

OBJECTIVE: This pilot study aims to examine the feasibility of using user-reported health data of cancer survivors and family members and friends on Twitter in Los Angeles County (LA) to improve recruitment for clinical trials. We focus on 6 cancerous conditions (breast cancer, colon cancer, kidney cancer, lymphoma, lung cancer and prostate cancer).

METHODS: The social media intervention consisted of monitoring cancer-specific posts on the 6 cancer conditions by Twitter users in LA County to identify cancer survivors, their family members and friends and to contact eligible Twitter users with information about open cancer trials at the University of Southern California. (USC) Norris Comprehensive Cancer Center. We reviewed retrospective and prospective data published by Twitter users in LA County between July 28, 2017 and November 29, 2018. The study included 124 open clinical trials at USC Norris. We used descriptive statistics to report the proportion of Twitter users identified, engaged and signed up.

RESULTS: We analyzed 107,424 English Twitter messages 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 and friends ; and 2/434, 0.5% of Twitter users were excluded). Of these, 51.4% (223/434) were women and about a third were men. About a fifth were people of color, while most of them were white. About a fifth (85/434, 19.6%) participated in the outreach messages (cancer survivors: 33/85, 38% and family and friends: 52/85, 61%). Of those who engaged with the messages, a quarter were men, the majority were women, and about a fifth were people of color, while the majority were white. About 12% (10/85) of contacted users requested more information and 40% (4/10) set up a pre-screening. Two eligible candidates were transferred to USC Norris for further screening, but none were entered.

CONCLUSIONS: Our results demonstrate the potential to identify and engage cancer survivors as well as their family members and friends on Twitter. Optimizing downstream recruitment efforts such as screening digital populations on social media may be necessary. Future research could test the feasibility of the approach for other diseases, places, languages, social media platforms and types of research participation (e.g. survey research). Computational methods could help scale up analysis of larger data sets to support more rigorous testing of the intervention.


PMID:34842538 | DO I:10.2196 / 29958


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