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Purpose Existing algorithms for predicting suicide risk rely solely on data from electronic health records, but such models could be improved through the incorporation of publicly available socioeconomic data – such as financial, legal, life event and sociodemographic data. The purpose of this study is to understand the complex ethical and privacy implications of incorporating sociodemographic data within the health context. This paper presents results from a survey exploring what the general public’s knowledge and concerns are about such publicly available data and the appropriateness of using it in suicide risk prediction algorithms. Design/methodology/approach A survey was developed to measure public opinion about privacy concerns with using socioeconomic data across different contexts. This paper presented respondents with multiple vignettes that described scenarios situated in medical, private business and social media contexts, and asked participants to rate their level of concern over the context and what factor contributed most to their level of concern. Specific to suicide prediction, this paper presented respondents with various data attributes that could potentially be used in the context of a suicide risk algorithm and asked participants to rate how concerned they would be if each attribute was used for this purpose. Findings The authors found considerable concern across the various contexts represented in their vignettes, with greatest concern in vignettes that focused on the use of personal information within the medical context. Specific to the question of incorporating socioeconomic data within suicide risk prediction models, the results of this study show a clear concern from all participants in data attributes related to income, crime and court records, and assets. Data about one’s household were also particularly concerns for the respondents, suggesting that even if one might be comfortable with their own being used for risk modeling, data about other household members is more problematic. Originality/value Previous studies on the privacy concerns that arise when integrating data pertaining to various contexts of people’s lives into algorithmic and related computational models have approached these questions from individual contexts. This study differs in that it captured the variation in privacy concerns across multiple contexts. Also, this study specifically assessed the ethical concerns related to a suicide prediction model and determining people’s awareness of the publicness of select data attributes, as well as which of these data attributes generated the most concern in such a context. To the best of the authors’ knowledge, this is the first study to pursue this question.
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Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study
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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- Award ID(s):
- 1947754
- PAR ID:
- 10176657
- Date Published:
- Journal Name:
- Journal of Medical Internet Research
- Volume:
- 21
- Issue:
- 10
- ISSN:
- 1438-8871
- Page Range / eLocation ID:
- e15455
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.2196/15455
