The perceptions of social and information privacy risks of Inflammatory Bowel Disease patients using social media platforms for health-related support

TL;DR

This study explores how inflammatory bowel disease patients perceive social and information privacy risks when using social media for health support, revealing a privacy calculus balancing risks and benefits.

Contribution

It provides qualitative insights into patients' privacy perceptions and highlights the knowledge gaps and decision-making processes regarding data sharing on social media.

Findings

Patients perceive a trade-off between privacy risks and social support benefits.

There is a mixed understanding of data collection and use by social media platforms.

Patients exhibit varying levels of agency over their personal data.

Abstract

With hundreds of thousands of individuals using social media to discuss health concerns, sensitive personal data is self-disclosed on these platforms every day. Previous research indicates an understanding of social privacy concerns by patients with chronic illnesses, but there is a lack of understanding in the perception of information privacy concerns. Qualitative interviews were conducted with 38 patients with inflammatory bowel disease (IBD) using social media platforms to engage with online communities. Using thematic analysis, we identified that patients typically demonstrate the privacy and risk dual calculus for perceived social privacy concerns. Patients demonstrate mixed knowledge of what data is collected and how it is used by social media platforms and often described their platform use as a trade-off between the unknown information privacy risks and the therapeutic affordances of engaging with the online community (the privacy calculus). Our findings illustrate the different levels of understanding between social and information privacy and the impacts on how individuals take agency over their personal data. We conclude with the suggestion for future research to further understand the relationship between knowledge, information privacy concerns and mitigating actions in the online health community context.