Shadow Health-Related Data: Definition, Categorization, and User Perspectives - Archive ouverte HAL
Communication Dans Un Congrès Année : 2024

Shadow Health-Related Data: Definition, Categorization, and User Perspectives

Résumé

Health-related data (HRD) about individuals are increasingly generated and processed. The sources and volume of such data have grown larger over the past years, including wearable devices, health-related mobile apps, and electronic health records. HRD are sensitive, have important privacy implications, and therefore hold a special status under existing privacy laws and regulations. In this work, we focus on what we refer to as "shadow" HRD, which are HRD that are generated and/or processed by individuals using general-purpose digital tools outside of a professional health care information system. Some examples are health-related queries made by individuals on general-purpose search engines and LLM-based chatbots, or medical appointments and contact information of health professionals synced to the cloud. Such data, and the privacy risks stemming from them, are often overlooked when studying digital health. Based on two focus group sessions (23 participants in total), we identified and categorized a broad variety of user behaviors, including the aforementioned examples, that lead to the creation of shadow HRD. Then, informed by this categorization, we designed a questionnaire and deployed it through an online survey (300 respondents) to assess the prevalence of such behaviors among the general public, as well as user awareness of (and concerns about) the privacy risks stemming from their shadow HRD. Our findings show that most respondents adopt numerous and diverse behaviors that create shadow HRD, and very few resort to mechanisms to protect their privacy.
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Dates et versions

hal-04668582 , version 1 (16-08-2024)

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Yamane El Zein, Kavous Salehzadeh Niksirat, Noé Zufferey, Mathias Humbert, Kévin Huguenin. Shadow Health-Related Data: Definition, Categorization, and User Perspectives. Proceedings of the European Symposium on Usable Security (EuroUSEC), Sep 2024, Karlstad, Sweden. pp.58-‌76, ⟨10.1145/3688459.3688462⟩. ⟨hal-04668582⟩
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