'In situ' data rights

Improving on data portability.

Development of a MyData Platform Based on the Personal Health Record Data Sharing System in Korea

Objectives: recently, there has been a government-level movement to guarantee the rights of individual entities regarding the use of their personal data worldwide. This movement has been specifically named as ‘MyData’ in South Korea and has variants such as ‘Self data’, ‘Midata’, ‘MesInfos’, ‘Personal Information Management Services’, ‘Personal Data Economy’ and ‘Internet of Me’ in other countries. This research project aimed to establish and demonstrate a system called ‘HiMD’, which allows individuals to select data sharing institutions and control a range of data utilization parameters under the MyData ecosystem. Method: we developed the MyData Platform, a personal health record data sharing system. The HiMD included several user-empowerment functions such as self-determination for data sharing. Actual platform users were recruited from three university-level hospitals for system assessment. Result: females comprised the majority of users with 991 participants (78.1%). Additionally, data consensus results revealed a decrease in given user permissions (from 94.9% to 79.4%) as the range and depth of permissions increased. Most users agreed to open their medical data for commercial uses (n = 1007, 79.4%) and most of those users were interested in DNA analysis (n = 888, 81.2%). Finally, all results for the five questions presented positive answers. All average values on the five questions scored above three on the Likert scale. In other words, over 50% participants gave point 4 and point 5. Conclusion: the contribution of this study is that it developed and demonstrated a MyData system that reflects the right to data portability. It means that the users can proactively make decisions regarding sharing and transferring their own data. These results are expected to contribute to developing future personal health record (PHR) systems of user-oriented and utilization of personal health data.

The strongest link: libraries and linked data

Since 1999 the W3C has been working on a set of Semantic Web standards that have the potential to revolutionize web search. Also known as Linked Data, the Machine‐Readable Web, the Web of Data, or Web3.0, the Semantic Web relies on highly structured metadata that allow computers to understand the relationships between objects. Semantic web standards are complex, and difficult to conceptualize, but they offer solutions to many of the issues that plague libraries, including precise web search, authority control, classification, data portability, and disambiguation. This article will outline some of the benefits that linked data could have for libraries, will discuss some of the non‐technical obstacles that we face in moving forward, and will finally offer suggestions for practical ways in which libraries can participate in the development of the semantic web.

Between incrementalism and revolution: How the GDPR right to data portability is revamped by the EU and the UK post Brexit

The right to data portability is facing a new lease of life not long after the GDPR takes effect. post Brexit, the EU and the UK have respectively released blueprints for making this right truly work for data subjects. This means that the undue constraints imposed on this right as a result of political compromise will be lifted, albeit not by revising GDPR provisions. This chapter seeks to map, evaluate and compare the revamping endeavours at both EU and UK levels. By navigating through a plethora of legislative proposals, policies and reviews, it shows that the two jurisdictions are embracing contrasting approaches and thus facing rather distinct challenges. The instruments used, purposes pursued, and how exactly the right is revamped differ greatly, thus calling for a comparative observation. It is argued that the EU could only vitalise the right after turning away from its conceptual maze and attending to the real needs of consumers. The UK should be commended for its stress on consumer needs and agency building but, as a double-edged sword, this approach also prompts a slippery slope towards lowered protection, which should be treated with caution.

Between incrementalism and revolution: How the GDPR right to data portability is revamped by the EU and the UK post Brexit

The right to data portability is facing a new lease of life not long after the GDPR takes effect. Post Brexit, the EU and the UK have respectively released blueprints for making this right truly work for data subjects. This means that the undue constraints imposed on this right as a result of political compromise will be lifted, albeit not by revising GDPR provisions. This chapter seeks to map, evaluate and compare the revamping endeavours at both EU and UK levels. By navigating through a plethora of legislative proposals, policies and reviews, it shows that the two jurisdictions are embracing contrasting approaches and thus facing rather distinct challenges. The instruments used, purposes pursued, and how exactly the right is revamped differ greatly, thus calling for a comparative observation. It is argued that the EU could only vitalise the right after turning away from its conceptual maze and attending to the real needs of consumers. The UK should be commended for its stress on consumer needs and agency building but, as a double-edged sword, this approach also prompts a slippery slope towards lowered protection, which should be treated with caution.