MOTIVATION: The data that put the 'evidence' into 'evidence-based medicine' are central to developments in public health, primary and hospital care. A fundamental challenge is to site such data in repositories that can easily be accessed under appropriate technical and governance controls which are effectively audited and are viewed as trustworthy by diverse stakeholders. This demands socio-technical solutions that may easily become enmeshed in protracted debate and controversy as they encounter the norms, values, expectations and concerns of diverse stakeholders. In this context, the development of what are called 'Data Safe Havens' has been crucial. Unfortunately, the origins and evolution of the term have led to a range of different definitions being assumed by different groups. There is, however, an intuitively meaningful interpretation that is often assumed by those who have not previously encountered the term: a repository in which useful but potentially sensitive data may be kept securely under governance and informatics systems that are fit-for-purpose and appropriately tailored to the nature of the data being maintained, and may be accessed and utilized by legitimate users undertaking work and research contributing to biomedicine, health and/or to ongoing development of healthcare systems. RESULTS: This review explores a fundamental question: 'what are the specific criteria that ought reasonably to be met by a data repository if it is to be seen as consistent with this interpretation and viewed as worthy of being accorded the status of 'Data Safe Haven' by key stakeholders'? We propose 12 such criteria. CONTACT: [email protected].

The American Law Institute has recently published principles of software contracts that may have profound impact on changing the software industry. One of the principles implies a nondisclaimable liability of software vendors for any hidden material defects. In this paper, we describe the new principle, first from a legal and then from a software engineering point of view. We point out potential ramifications and research directions for the software engineering community.

There is a rapidly growing market for direct-to-consumer health services offered through the Internet and other information and communication technologies (ICT). Personal health information is one of the most sensitive types of data;while consumer health services have many potential health benefits, privacy advocates have warned consumers about the privacy risks associated with the indiscriminate use of direct-to-consumer services. Some tools and methods have been developed to aid consumers in assessing the privacy risk of ICT-based consumer health services. Most of these methods focus on the privacy policies published by the service provider, and are limited to a particular class of service offerings, e.g., Personal Health Records. While these methods have proven useful in gauging the apparent risk associated with certain types of services, they fall short of addressing the inherent risks of an entire spectrum of different service types. Moreover, privacy policy based risk assessment falls short of catching some of the more subtle privacy threats, such as indirect information disclosure due to targeted advertisements and social computing. This paper attempts to fill this gap by proposing a complementary tool to aid consumers in gauging the inherent privacy risks associated with consumer health services. The tool was developed based on a systematic review of the types of services and their associated privacy risks.

Social computing is a relatively new approach to systems design that emphasizes the importance of facilitating collaboration and communication between users. Although social networking is now part of mainstream culture, the use of these applications in the health care space is still in its infancy in Canada. As major vendors are preparing to enter the marketplace, it is important for a wide variety of stakeholders to discern the ramifications of this next wave of technological innovation. This paper discusses social networking applications for health care, and the challenges of dealing with this new type of information management system under current Canadian law. While regulatory authorities have considered the privacy and security implications of social networking in the course of investigating complaints, this paper contains the first explicit analysis of the legal difficulties surrounding the use of social networking for health care applications in Canada. Those risks not covered by the current regulatory framework are assessed from the standpoint of privacy-by-design, as we discuss how software developers can build privacy protection into social networking applications.