Trustworthy shared electronic health records: recordkeeping requirements and HealthConnect

HealthConnect is a proposed national electronic health record system, centred on electronic health event summaries, that capture all health encounters of those patients and health care professionals who "opt in" to the system. This article reports on key findings of an analysis of HealthConnect's data principles, systems and business architecture, from a records continuum perspective, and from recordkeeping requirements of reliability and authenticity. It concludes that HealthConnect lacks critical recordkeeping functionality and that inadequate policy with regard to ownership, consent and privacy impacts on the business and systems architecture, and consequently its ability to deliver trustworthy records.     

Ethical issues in HealthConnect's shared electronic health record system

Many countries are in the process of implementing systems of shared electronic health records. This article explores some of the ethical concerns raised by Australia's proposed HealthConnect system which aims to create electronic event summaries of health information. Three areas of ethical concern relating to confidentiality, consent and the involvement of the private sector are examined. It is argued that unless the HealthConnect system is firmly grounded in policy based on ethical considerations, patients may not want to "opt in" to it.     

From electronic health records to personal health records: emerging legal issues in the Italian regulation of e-health

In 2012, the Italian Legislator has provided an appropriate legal framework for the realisation of the national Electronic Health Records (EHR) system, in which the patient plays a pivotal role: with the implementation of the Fascicolo sanitario elettronico (FSE), patients will have access to their EHRs through the online platform, and decide which data to share and with whom. In this perspective, one of the most interesting innovations is the so-called ‘taccuino’, a digital space of patients’ FSE in which they can autonomously record data and information relating to their health. Patients’ ability to access their own health data and EHR at any time and to enter information by themselves in a personal area is a unique form of power at a European level, but their legal consequences are still vague. The aim of this contribution is to offer a first review of the Italian e-health reform, showing the most critical aspects.     

What the Dickens: Post-mortem privacy and intergenerational trust

The paper argues that protecting post-mortem privacy is not solely beneficial for the deceased and their relatives but enables intergenerational data-sharing. However, legal approaches alone are unlikely to generate the trust required and need to be supplemented with tools that assist data subjects in controlling what data they risk sharing more efficiently and, which they prefer to delete. Using the example of Dickens' “Bonfire of letters” as an example, we argue that the main challenge for law and digital technology is the cumulative risk of data breadcrumbs, which are likely to be individually harmless. Based on research within the EPSRC project “Cumulative Revelations of Personal Data”, we discuss how our findings indicate possible avenues to assist in more efficient intergenerational data sharing.