Privacy policies for health social networking sites: Table 1

Li, Jingquan

doi:10.1136/amiajnl-2012-001500

Cited by 47 publications

(45 citation statements)

References 20 publications

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“…A common approach used is based on the personally controlled heath records (PCHRs) platform developed at the Children's Hospital Informatics Program (CHIP) at Children's Hospital Boston. 4,8 PCHRs allow consumers to assemble, maintain, and manage a secure copy of their medical data. Indivo, an Internet-based implementation of a PCHR, is in use worldwide and has served as a reference model for some web-based PHR systems including Dossia and Microsoft HealthVault.…”

Section: Consumer-controlled Privacy Protection Approachmentioning

confidence: 99%

“…The potential inappropriate access, misuse, and disclosure of personal health data and the challenges involved in prevention of prejudice or discrimination, medical identity theft, and commercial scams, need to be addressed technically and legally. 4 Very real privacy threats and vulnerabilities, along with potential disclosure and misuse by commercial companies, highlight the need for addressing the trust and privacy issues. Given that the use of PHRs is a relatively new technological innovation, there is little research that approaches architectural properties of PHR systems, particularly their privacy and security properties.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Electronic Personal Health Records and the Question of Privacy

2020

Computer

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Personal health records (PHRs), centralized places for consumers to electronically store, manage, and share their personal health information, offer new opportunities to help consumers manage their own health and health care. However, ensuring the privacy and confidentiality of health information contained within PHRs is challenging. This paper analyzes the major properties of existing PHR systems and identifies specific privacy and security issues with each type of PHR. It proposes a consumer-controlled privacy protection approach that includes highminded privacy principles such as independent consent management, independent privacy and security audits, and regulatory compliance requirements. The paper further presents a consumercontrolled system architecture that embodies these principles in the web-based PHR system.

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Section: Consumer-controlled Privacy Protection Approachmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Electronic Personal Health Records and the Question of Privacy

2020

Computer

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“…For example, an SNS may communicate with advertising servers, which produce targeted advertising based on details contained in user profiles. The ability to draw data from multiple websites and apps may allow third parties to create a comprehensive digital profile of private data, accumulating more than what a user would have predicted [2,28]. …”

Section: Privacy Threatsmentioning

confidence: 99%

“…Users are often incapable of defending their privacy just because they do not know that their privacy is even endangered. Privacy policies, especially relating to third parties, apps, and social network data sharing and integration, are often vague, uninformative, and seldom reflect users’ expectations [2,28,29]. …”

Section: Privacy Threatsmentioning

confidence: 99%

“…While privacy concerns in social networks are well recognized by prior research [2-7], the literature on innovative privacy-preserving models and technical standards is quite limited. Based on expert opinions on the major privacy concerns, the effectiveness of possible solutions, and the requirements for developing privacy-preserving social network apps, Weiss [7] proposed a privacy threat model for data portability in social network apps.…”

Section: Introductionmentioning

confidence: 99%

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A Privacy Preservation Model for Health-Related Social Networking Sites

2015

J Med Internet Res

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The increasing use of social networking sites (SNS) in health care has resulted in a growing number of individuals posting personal health information online. These sites may disclose users' health information to many different individuals and organizations and mine it for a variety of commercial and research purposes, yet the revelation of personal health information to unauthorized individuals or entities brings a concomitant concern of greater risk for loss of privacy among users. Many users join multiple social networks for different purposes and enter personal and other specific information covering social, professional, and health domains into other websites. Integration of multiple online and real social networks makes the users vulnerable to unintentional and intentional security threats and misuse. This paper analyzes the privacy and security characteristics of leading health-related SNS. It presents a threat model and identifies the most important threats to users and SNS providers. Building on threat analysis and modeling, this paper presents a privacy preservation model that incorporates individual self-protection and privacy-by-design approaches and uses the model to develop principles and countermeasures to protect user privacy. This study paves the way for analysis and design of privacy-preserving mechanisms on health-related SNS.

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Information quality, privacy policies, and data safety practices in online social networks for health: A longitudinal analysis

Costello

2015

Proc. Assoc. Info. Sci. Tech.

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This paper describes a longitudinal analysis of online social networks designed for patients diagnosed with chronic kidney disease. Observational analysis of 20 indicators in three domains -practices for auditing and moderating the quality of content provided by users, accessibility of privacy policies, and data sharing policies and member control over data sharing -was conducted on 10 sites in 2013 and again on 12 sites in 2015, with 7 of the same sites included in both samples. The sites were identified using Google. Indicators for each domain were scored dichotomously. These scores were compared among sites in order to analyze their general practices and policies. Total composite scores were also analyzed to determine whether individual sites had significantly different practices and policies in comparison with the group. Finally, scores for each domain were compared across years in order to assess whether practices and policies had changed over time.Differences in site practices and policies between 2013 and 2015 were not significant, although there is much room for improvement in all domains. Quality was variable across all sites, with gaps in medical disclaimers, a lack of external review of privacy policies and data safety audits, and missing information about internal quality control in the form of moderators. Although most sites employ moderators, their credentials are not often reported. Privacy policies are inaccessible across the board, with none readable at below a twelfth-grade level. Data safety practices are also problematic, with most sites sharing user data with third parties.The quality and safety of social networks for CKD is variable, and improvement is feasible. Suggested improvements include auditing privacy policies and data safety practices, making information about moderators easily available, and third-party audits of information posted by users to ensure the removal of misinformation.

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Privacy policies for health social networking sites: Table 1

Cited by 47 publications

References 20 publications

Electronic Personal Health Records and the Question of Privacy

Electronic Personal Health Records and the Question of Privacy

A Privacy Preservation Model for Health-Related Social Networking Sites

Information quality, privacy policies, and data safety practices in online social networks for health: A longitudinal analysis

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