Background Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users’ perspectives in the development of ethical norms and regulations. Objective This study examined the attitudes and level of concern among Twitter users and nonusers about using Twitter for monitoring social media users and their conversations to recruit potential clinical trial participants. Methods We used two online methods for recruiting study participants: the open survey was (1) advertised on Twitter between May 23 and June 8, 2017, and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform, between May 23 and June 8, 2017. Eligible participants were adults, 18 years of age or older, who lived in the United States. People with and without Twitter accounts were included in the study. Results While nearly half the respondents—on Twitter (94/603, 15.6%) and on TurkPrime (509/603, 84.4%)—indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over one-third disagreed and nearly 1 in 5 had no opinion. A chi-square test revealed a positive relationship between respondents’ general privacy concern and their average concern about Internet research (P<.005). We found associations between respondents’ Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity for clinical trial recruitment (P=.001) and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P<.001) and an invasion of privacy (P=.003). As Twitter literacy increased, so did people’s concerns about researchers monitoring Twitter activity. Our data support the previously suggested use of the nonexceptionalist methodology for assessing social media in research, insofar as social media-based recruitment does not need to be considered exceptional and, for most, it is considered preferable to traditional in-person interventions at physical clinics. The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic (eg, HIV/AIDS vs obesity vs smoking), the entity or person monitoring users on Twitter, and the monitored information. Conclusions The data and findings from this study contribute to the critical dialogue with the public about the use of social media in clinical research. The findings suggest that most users do not think that monitoring Twitter for clinical trial recruitment constitutes inappropriate surveillance or a violation of privacy. However, researchers should remain mindful that some participants might find social media monitoring problematic when connected with certain conditions or health topics. Further research should isolate factors that influence the level of concern among social media users across platforms and populations and inform the development of more clear and consistent guidelines.
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This content will become publicly available on June 2, 2024
Information Operations in Turkey: Manufacturing Resilience with Free Twitter Accounts
Following the 2016 US elections Twitter launched their Information Operations (IO) hub where they archive account activity connected to state linked information operations. In June 2020, Twitter took down and released a set of accounts linked to Turkey's ruling political party (AKP). We investigate these accounts in the aftermath of the takedown to explore whether AKP-linked operations are ongoing and to understand the strategies they use to remain resilient to disruption. We collect live accounts that appear to be part of the same network, ~30% of which have been suspended by Twitter since our collection. We create a BERT-based classifier that shows similarity between these two networks, develop a taxonomy to categorize these accounts, find direct sequel accounts between the Turkish takedown and the live accounts, and find evidence that Turkish IO actors deliberately construct their network to withstand large-scale shutdown by utilizing explicit and implicit signals of coordination. We compare our findings from the Turkish operation to Russian and Chinese IO on Twitter and find that Turkey's IO utilizes a unique group structure to remain resilient. Our work highlights the fundamental imbalance between IO actors quickly and easily creating free accounts and the social media platforms spending significant resources on detection and removal, and contributes novel findings about Turkish IO on Twitter.
more » « less- Award ID(s):
- 2131144
- NSF-PAR ID:
- 10486364
- Publisher / Repository:
- AAAI
- Date Published:
- Journal Name:
- Proceedings of the International AAAI Conference on Web and Social Media
- Volume:
- 17
- ISSN:
- 2162-3449
- Page Range / eLocation ID:
- 638 to 649
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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