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Accepted for/Published in: JMIR Formative Research

Date Submitted: Apr 26, 2021
Date Accepted: Sep 20, 2021
Date Submitted to PubMed: Nov 29, 2021

The final, peer-reviewed published version of this preprint can be found here:

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

Reuter K, Angyan P, Le N, Buchanan TA

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

JMIR Form Res 2021;5(11):e29958

DOI: 10.2196/29958

PMID: 34842538

PMCID: 8665395

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

  • Katja Reuter; 
  • Praveen Angyan; 
  • NamQuyen Le; 
  • Thomas A. Buchanan

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/friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors into cancer trials.

Objective:

This pilot examined the feasibility of using user-reported health data from cancer survivors and family members/friends on Twitter in Los Angeles County for enhancing clinical trial recruitment. We focused on six cancer conditions (breast, colon, kidney, lymphoma, lung cancer, and prostate).

Methods:

The social media intervention involved (1) monitoring cancer-specific posts about the six cancers by Twitter users in Los Angeles (L.A.) County to identify cancer survivors and their family members/friends, and (2) contacting eligible Twitter users with information about open cancer trials at the USC Norris Comprehensive Cancer Center (USC Norris). We reviewed both retrospective and prospective data published by Twitter users in L.A. 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 L.A. County for the six cancer conditions. We identified and contacted 434 (1.7%) eligible cancer survivors (29.3 %; 127/434) and their family members/friends (70.3%; 305/434). Half of them were female and about a third was male. About one-fifth were Persons of Color, while most of them were White. About one-fifth (19.6%, 85/434) engaged with the outreach messages (cancer survivors: 38.2%, 33/85; family members/friends: 61.2%, 52/85). A quarter of those who engaged with the message were male, the majority were women, and about one-fifth were People of Color, while the majority was White. Nearly 12% (10/85) of the 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. Both were eligible for trial participation, but none of them enrolled.

Conclusions:

Our findings demonstrate the potential of identifying and engaging cancer survivors and their family members/friends on Twitter. The 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 datasets to support more rigorous testing of the intervention. Clinical Trial: not applicable


 Citation

Please cite as:

Reuter K, Angyan P, Le N, Buchanan TA

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

JMIR Form Res 2021;5(11):e29958

DOI: 10.2196/29958

PMID: 34842538

PMCID: 8665395

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