The Privacy Paradox in the Context of Online Health Data Disclosure by Users

Kosyfaki, Chrysanthi; Angelova, Nelina P.; Tsohou, Aggeliki; Magkos, Emmanouil

doi:10.1007/978-3-319-65930-5_34

Cited by 2 publications

(2 citation statements)

References 6 publications

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“…However, some contemporary social media platforms, such as Facebook, require users to use their 'real identity' as a trust mechanism [34] making anonymity more difficult on some contemporary platforms. Furthermore, while screen names may decrease identification from other users, other personal information credentials, such as email address and date of birth are collected by the platforms [82].…”

Section: Online Health Communitiesmentioning

confidence: 99%

Towards understanding how individuals with inflammatory bowel disease use contemporary social media platforms for health-related discourse

O'Leary

Coulson

Perez-Vallejos

et al. 2020

Computers in Human Behavior

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Section: Online Health Communitiesmentioning

confidence: 99%

Towards understanding how individuals with inflammatory bowel disease use contemporary social media platforms for health-related discourse

O'Leary

Coulson

Perez-Vallejos

et al. 2020

Computers in Human Behavior

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“…People have mixed views [ 22 ], particularly where medical data are concerned, depending on the context and purpose of use. The existence of the privacy paradox with regard to health-related data is disputed [ 23 ]; users do not seem to understand the value of their health data and thus disclose them due to this lack of awareness.…”

Section: Introductionmentioning

confidence: 99%

Machine Learning–Based Analysis of Encrypted Medical Data in the Cloud: Qualitative Study of Expert Stakeholders’ Perspectives

Alaqra¹,

Kane²,

Fischer‐Hübner³

2021

JMIR Hum Factors

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Background Third-party cloud-based data analysis applications are proliferating in electronic health (eHealth) because of the expertise offered and their monetary advantage. However, privacy and security are critical concerns when handling sensitive medical data in the cloud. Technical advances based on “crypto magic” in privacy-preserving machine learning (ML) enable data analysis in encrypted form for maintaining confidentiality. Such privacy-enhancing technologies (PETs) could be counterintuitive to relevant stakeholders in eHealth, which could in turn hinder adoption; thus, more attention is needed on human factors for establishing trust and transparency. Objective The aim of this study was to analyze eHealth expert stakeholders’ perspectives and the perceived tradeoffs in regard to data analysis on encrypted medical data in the cloud, and to derive user requirements for development of a privacy-preserving data analysis tool. Methods We used semistructured interviews and report on 14 interviews with individuals having medical, technical, or research expertise in eHealth. We used thematic analysis for analyzing interview data. In addition, we conducted a workshop for eliciting requirements. Results Our results show differences in the understanding of and in trusting the technology; caution is advised by technical experts, whereas patient safety assurances are required by medical experts. Themes were identified with general perspectives on data privacy and practices (eg, acceptance of using external services), as well as themes highlighting specific perspectives (eg, data protection drawbacks and concerns of the data analysis on encrypted data). The latter themes result in requiring assurances and conformance testing for trusting tools such as the proposed ML-based tool. Communicating privacy, and utility benefits and tradeoffs with stakeholders is essential for trust. Furthermore, stakeholders and their organizations share accountability of patient data. Finally, stakeholders stressed the importance of informing patients about the privacy of their data. Conclusions Understanding the benefits and risks of using eHealth PETs is crucial, and collaboration among diverse stakeholders is essential. Assurances of the tool’s privacy, accuracy, and patient safety should be in place for establishing trust of ML-based PETs, especially if used in the cloud.

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The Privacy Paradox in the Context of Online Health Data Disclosure by Users

Cited by 2 publications

References 6 publications

Towards understanding how individuals with inflammatory bowel disease use contemporary social media platforms for health-related discourse

Towards understanding how individuals with inflammatory bowel disease use contemporary social media platforms for health-related discourse

Machine Learning–Based Analysis of Encrypted Medical Data in the Cloud: Qualitative Study of Expert Stakeholders’ Perspectives

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