UK National Data Guardian for Health and Care’s Review of Data Security: Trust, better security and opt-outs (original) (raw)
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Personal health data - privacy policy harmonization and global enforcement
2016
This workshop is jointly organized by EFMI Working Groups Security, Safety and Ethics and Personal Portable Devices in cooperation with IMIA Working Group "Security in Health Information Systems". In contemporary healthcare and personal health management the collection and use of personal health information takes place in different contexts and jurisdictions. Global use of health data is also expanding. The approach taken by different experts, health service providers, data subjects and secondary users in understanding privacy and the privacy expectations others may have is strongly context dependent. To make eHealth, global healthcare, mHealth and personal health management successful and to enable fair secondary use of personal health data, it is necessary to find a practical and functional balance between privacy expectations of stakeholder groups. The workshop will highlight these privacy concerns by presenting different cases and approaches. Workshop participants will...
The European Journal of Public Health, 2012
Background: The EUBIROD project aims to perform a cross-border flow of diabetes information across 19 European countries using the BIRO information system, which embeds privacy principles and data protection mechanisms in its architecture (privacy by design). A specific task of EUBIROD was to investigate the variability in the implementation of the EU Data Protection Directive (DPD) across participating centres. Methods: Compliance with privacy requirements was assessed by means of a specific questionnaire administered to all participating diabetes registers. Items included relevant issues e.g. patient consent, accountability of data custodian, communication (openness) and complaint procedures (challenging compliance), authority to disclose, accuracy, access and use of personal information, and anonymization. The identification of an ad hoc scoring system and statistical software allowed an overall quali-quantitative analysis and independent evaluation of questionnaire responses, automated through a dedicated IT platform ('privacy performance assessment'). Results: A total of 18 diabetes registers from different countries completed the survey. Over 50% of the registers recorded a maximum score for accountability, openness, anonymization and challenging compliance. Low average values were found for disclosure and disposition, access, consent, use of personal information and accuracy. A high heterogeneity was found for anonymization, consent, accuracy and access. Conclusions: The novel method of privacy performance assessment realized in EUBIROD may improve the respect of privacy in each data source, reduce overall variability in the implementation of privacy principles and favour a sound and legitimate cross-border exchange of high quality data across Europe.
Research shows that despite organisational efforts to achieve privacy compliance, privacy breaches continue to rise. The extant studies on organisational privacy compliance concentrate on the extent to which privacy threats can be alleviated through a combination of technical and human controls and the positive (and often intended) influences of these controls. This focus inadvertently neglects unintended consequences such as impeded workflow in medical practices. To address this research conflict, this study uses an interpretive grounded theory research approach to investigate the consequences of privacy safeguard enactment in medical practices, including whether it influences their ability to meet privacy requirements and whether workflows are impeded. Our central contribution is a theoretical framework, the unintended consequences of privacy safeguard enactment (UCPSE) framework, which explicates the process by which privacy safeguards are evaluated and subsequently bypassed and the resulting influence on organisational compliance. The UCPSE highlights the importance of the imbalance challenge, which is the result of unintended consequences outweighing the intended consequences of privacy safeguard enactment. Failure to address the imbalance challenge leads to the adoption of workarounds that may ultimately harm the organisation’s privacy compliance. Despite several research calls, the consequences and effectiveness of organisational privacy efforts are largely missing from both information systems and health informatics research. This study is one of the first attempts to both systematically identify the impacts of privacy safeguard enactment and to examine its implications for privacy compliance in the healthcare domain. The findings also have practical implications for healthcare executives on the unintended consequences of privacy safeguard enactment and how they could alleviate the imbalance challenge to thwart workarounds and the subsequent negative effects on privacy compliance.
Inadequate: The APEC Privacy Framework & Article 25 of the European Data Protection Directive
The author analyses the APEC Privacy Framework in light of Article 25 of the EU Data Protection Directive, which requires that a third country’s data protection regime be found ‘adequate’ before transborder flows of personal data are permitted. The author contends that the two regimes reflect two different normative approaches to informational privacy. The APEC Framework treats informational privacy protections as tools that can perform useful regulatory roles in the market, and can therefore easily be balanced against other economic interests. In contrast, the EU Directive sees informational privacy as a fundamental moral right tied to notions of human dignity and autonomy, and is therefore limitable only in narrow circumstances. These two approaches result in different substantive and procedural protections in each regime. When one analyses the Framework using the Working Party’s own approach to findings of adequacy, it is clearly lacking in both substantive and procedural terms. Were an APEC Member economy ever to implement the Framework as domestic data protection legislation in, the author contends that these weaknesses mean that the Commission ought to reject any application for adequacy. The author next considers whether the Commission should enter negotiations with APEC with an eye to converting the Framework into something resembling the Safe Harbor agreement it reached with the U.S. in 2000. This is rejected, however, on both practical and ideological grounds. The self-certifying Safe Harbor regime has failed to ensure the protection of European data that is transmitted to the U.S., and agreeing to another Safe Harbor style agreement threatens to weaken the normative core of the Directive, lessening the ability of Article 25 to encourage the global spread of robust data protection regimes. The best course of action for the Commission is to encourage third countries to improve their data protection regimes to the level truly required to be found ‘adequate’, rather than accepting substandard principles in the face of economic pressure.
Towards a Global Data Privacy Standard
Florida Law Review, 2019
This Article questions the widespread contention that recent updates to European Union (EU) data protection law will drive a disruptive wedge between EU and United States (U.S.) data privacy regimes. Europe's General Data Protection Regulation (GDPR), which took effect in May 2018, gives all EU citizens easier access to their data, a right to portability, a right to be forgotten, and a right to learn when their data has been hacked. These mandatory privacy protections apply to non-EU companies that offer goods or services to EU consumers, whether through a subsidiary or a website. The "Brussels Effect" hypothesis projects a "race to the top" as multinational entities find it easier to adopt the most stringent data protection standards worldwide, rather than satisfying divergent data privacy rules. The GDPR is said to be a prime example of the Brussels Effect because of its aggressive extraterritorial scope that unilaterally imposes EU law on U.S. entities. This Article acknowledges a Brussels Effect, but there is also an overlooked "D.C. Effect" reflected in the GDPR's adoption of many U.S. data privacy innovations. The GDPR imports long-established U.S. tort concepts for the first time into European privacy law, including deterrence-based fines, collective redress, wealth-based punishment, and arming data subjects with the right to initiate public enforcement. Under the GDPR, the EU Commission adopted "Privacy by Design" and security breach notification obligations, innovations pioneered in the U.S. The net effect of the GDPR is a bilateral transatlantic privacy convergence, which is rapidly evolving into a global data privacy 1. The authors would like to acknowledge the support, encouragement, and ideas of
European Journal of Information Systems, 2023
One needs to look only at recent data breaches to be reminded of the severe and far-reaching damage caused by privacy threats. Considering these threats, healthcare leaders strive to understand how to protect patient information without losing the benefits (utility) that result from privacy-preserving mechanisms. Our study examines the relatively unexplored issue of simultaneously responding to information privacy threats and maintaining utility. Thus, we also identify a symbiotic relationship between these two focal and interdependent efforts. We adopt an interpretive, qualitative research method leveraging the value-focused thinking (VFT) approach, which results in two major contributions: (1) the development of a value-driven framework presented as a means-end objective network that provides a list of 16 means objectives and seven key fundamental objectives enabling higher-quality decision-making vis-à-vis privacy and utility; (2) Our second and central contribution is a theoretical framework of privacy impact assessment (PIA), emphasising the interplay and balance between making appropriate decisions in responding to information privacy while not hindering business operations. This research provides the foundation for proposing four compelling propositions for future healthcare privacy research.
Acta Iuris Stetinensis, 2021
It is widely recognised that the first binding legal act regarding the protection of personal data of an international nature is Convention 108, adopted on 28 January 1981. By virtue of the Convention, the Parties are required to apply in their domestic legal order the principles introduced by the Council of Europe to ensure guarantees for the fundamental human rights of all individuals with regard to the processing of personal data. This paper refers to Convention 108 as the foundation for European and international data protection laws in a number of European countries. It has influenced policies and legislation far beyond Europe's borders. However, due to the development of ICT tools that permit establishing new data-driven business models based on data-processing systems, Convention 108 has become subject to modernisation. At the same time, intensive negotiations were conducted in the EU concerning a new data-protection package to reform the data-protection system, and many other countries around the world have introduced provisions related to the processing of personal data. This paper analyses the impact of the standards set out in Convention 108 on the decision-making process and its global dimension.