Katja Reuter|Yifan Zhu|Praveen Angyan|NamQuyen Le|Akil Merchant|Michael Zimmer
Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study
Southern California Clinical and Translational Science Institute|University of Southern California|SUNY Upstate Medical University|University of Wisconsin–Milwaukee|University of Southern California|Southern California Clinical and Translational Science Institute|Southern California Clinical and Translational Science Institute|University of Southern California|Cedars-Sinai Medical Center|Marquette University
social networks twitter offer clinical research community novel opportunity engaging potential study participants based user activity data however availability public social media data led new ethical challenges respecting user privacy appropriateness monitoring social media clinical trial recruitment researchers voiced need involving users perspectives development ethical norms regulationsthis study examined attitudes level concern among twitter users nonusers using twitter monitoring social media users conversations recruit potential clinical trial participantswe used two online methods recruiting study participants open survey 1 advertised twitter may 23 june 8 2017 2 deployed turkprime crowdsourcing data acquisition platform may 23 june 8 2017 eligible participants adults 18 years age older lived united states people without twitter accounts included studywhile nearly half respondentson twitter 94603 156 turkprime 509603 844indicated agreement social media monitoring constitutes form eavesdropping invades privacy onethird disagreed nearly 1 5 opinion chisquare test revealed positive relationship respondents general privacy concern average concern internet research p005 found associations respondents twitter literacy concerns ability researchers monitor twitter activity clinical trial recruitment p001 whether consider twitter monitoring clinical trial recruitment eavesdropping p001 invasion privacy p003 twitter literacy increased peoples concerns researchers monitoring twitter activity data support previously suggested use nonexceptionalist methodology assessing social media research insofar social mediabased recruitment need considered exceptional considered preferable traditional inperson interventions physical clinics expressed attitudes highly contextual depending factors type disease health topic eg hivaids vs obesity vs smoking entity person monitoring users twitter monitored informationthe data findings study contribute critical dialogue public use social media clinical research findings suggest users think monitoring twitter clinical trial recruitment constitutes inappropriate surveillance violation privacy however researchers remain mindful participants might find social media monitoring problematic connected certain conditions health topics research isolate factors influence level concern among social media users across platforms populations inform development clear consistent guidelines