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. 2019 Oct 30;21(10):e15455. doi: 10.2196/15455

Table 4.

Summary of study findings by study hypothesis.

Hypotheses Overall findings (nonstratified)
Primary hypotheses: derived from CIRBa feedback

Hypothesis 1: Social media monitoring on Twitter for clinical trial recruitment is perceived as eavesdropping and as an invasion of privacy. Not supported. While nearly half the respondents 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. Fewer respondents felt that social media monitoring jeopardizes confidentiality.

Hypothesis 2: Twitter users’ expectations of privacy relate to their level of concern about the use of social media monitoring for clinical trial recruitment. Supported. Chi-square tests revealed a positive relationship between respondents’ general privacy concerns and their average concerns about Internet research (N=603): χ216=143.0, P<.005. Additionally, respondents who indicated some general privacy concern also generally expressed greater concern over social media monitoring, in general, as well as for each vignette scenario. Chi-square tests confirmed a statistically significant relationship between general privacy concern and concern for each vignette.

Hypothesis 3: General literacy about the Twitter platform is associated with the level of concern about the use of social media monitoring on Twitter for clinical trial recruitment. Supported. There was a statistically significant association (P=.001) between respondents’ Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity, generally, for the purpose of clinical trial recruitment. Overall, as Twitter literacy increased, so did people’s concerns about researchers monitoring Twitter activity. While there was an association between respondents’ Twitter literacy and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping or an invasion of privacy, there was no significant association with whether respondents felt Twitter monitoring jeopardizes confidentiality.
Testing the validity of the nonexceptionalist methodology

Hypothesis 4: People’s concerns over Twitter monitoring for clinical trial recruitment are similar to those of more traditional, offline scenarios (eg, discretely approaching a patient in person as they leave a medical facility). Supported. Most people were either indifferent, did not know, or were less comfortable with an in-person approach, regardless of previous Twitter usage and across all disease types. They did not find Twitter monitoring any more concerning than the more traditional means of clinical trial subject recruitment. Overall, the data presented here support the use of the nonexceptionalist methodology for assessing social media-based monitoring and recruitment.
Factors that might impact the level of concern over social media monitoring for clinical trial recruitment

Hypothesis 5: The type of information monitored for the purpose of identifying individuals to recruit for clinical trials is associated with the level of concern over the use of social media monitoring on Twitter for clinical trial recruitment. Partially supported. While not a majority, nearly half the respondents did indicate general concern about researchers actively monitoring users’ Twitter activity to identify and contact potential participants for clinical trials. The greatest concern was related to reviewing the text of their profile description, with less concern expressed related to monitoring hashtags or the text of individual tweets.

Hypothesis 6: The type of disease recruited for is associated with the level of concern over the use of social media monitoring on Twitter for clinical trial recruitment. Supported. Nearly 6 out of 10 respondents expressed concern about monitoring for an HIV/AIDS trial compared to other disease topics that raised less concern, such as cancer, obesity, HPVb vaccination, and smoking.

Hypothesis 7: The nature of the entity performing social media monitoring on Twitter is associated with the level of concern over this monitoring for clinical trial recruitment. Supported. The factor that most impacted the level of concern was the entity or person who conducted the Twitter monitoring and research. The exception was the HIV/AIDS scenario, where respondents who expressed overall concern noted that The nature of the disease/medical condition being monitored for was the main contributing factor.

aCIRB: Central Institutional Review Board.

bHPV: human papilloma virus.