1,720,978 research outputs found
Building trust through data foundations: a call for a data governance model to support trustworthy data sharing
Full text linkThis white paper sets out how to embody a Data Governance Model which builds trust, particularly when used with large group data sharing, within and between different organisations through the legal structure of a Data Foundation in the Channel Islands
Fostering trustworthy data sharing: establishing data foundations in practice
No full textIndependent data stewardship remains a core component of good data governance practice. Yet, there is a need for more robust independent data stewardship models that are able to oversee data-driven, multi-party data sharing, usage and re-usage, which can better incorporate citizen representation, especially in relation to personal data. We propose that data foundations – inspired by Channel Islands’ foundations laws – provide a workable model for good data governance not only in the Channel Islands but also elsewhere. A key advantage of this model – in addition to leveraging existing legislation and building on established precedent – is the statutory role of the guardian that is a unique requirement in the Channel Islands, and when interpreted in a data governance model provides the independent data steward. The principal purpose for this paper therefore is to demonstrate why data foundations are well suited to the needs of data sharing initiatives. We further examine how data foundations could be established in practice – and provide key design principles that should be used to guide the design and development of any data foundation<br/
Personal data store ecosystems in health and social care
No full textThis paper considers how the development of personal data store ecosystems in health and social care may offer one person-centered approach to improving the ways in which individual generated and gathered data—e.g., from wearables and other personal monitoring and tracking devices—can be used for wellbeing, individual care, and research. Personal data stores aim to provide safe and secure digital spaces that enable people to self-manage, use, and share personal data with others in a way that aligns with their individual needs and preferences. A key motivation for personal data stores is to give an individual more access and meaningful control over their personal data, and greater visibility over how it is used by others. This commentary discusses meanings and motivations behind the personal data store concept—examples are provided to illustrate the opportunities such ecosystems can offer in health and social care, and associated research and implementation challenges are also examined
Data mining and automated discrimination: a mixed legal/technical perspective
No full textSocially sensitive decisions about critical issues such as employment, credit scoring, or insurance premiums are increasingly automated based on big data mining. Although algorithms do not have personal preferences, they are not neutral, and the data itself can reflect various undesirable biases. The authors discuss how discrimination-aware data mining constitutes a crucial step to counter automated discrimination. They then explain why the complexity of legal and social norms requires a balanced interdisciplinary methodology and toolset comprising requirements relating to data accuracy, protection, and provenance, and legitimacy of targeted objectives
Data protection by design: building the foundations of trustworthy data sharing
No full textData trusts have been conceived as a mechanism to enable the sharing of data across entities where other formats, such as open data or commercial agreements, are not appropriate, and make data sharing both easier and more scalable. Although the form and purposes of data trusts are currently a topic of much academic discussion, a broadly accepted definition has not yet emerged. The concept of the ‘data trust’ requires further disambiguation from other facilitating structures such as data collaboratives. Irrespective of the terminology used, attempting to create trust in order to facilitate data sharing, and create benefit to individuals, groups of individuals, or society at large, requires at a minimum a process-based mechanism, i.e. a workflow, that should have a trustworthiness-by-design approach at its core. Data protection by design (DPbD) should be a key component of such an approach
Response to the data intermediaries call for evidence
No full textResponse providing examples of where data subject rights are currently exercised by third parties on the instruction of, or in the interest of, the data subject.<br/
Overwhelmed by privacy
No full textMuch has been written about privacy attitudes and how private citizens makedecisions to share their personal data. The privacy paradox, for instance, maintains that despite claims to be concerned about the privacy of their data, private citizen behaviour seems to contradict such claims especially online. A series of well-known consumer surveys in the USA identified three behavioural types derived from statements relating to three constructs: trust in those receiving the personal data, the individual’s control over their data, and the governance structures in place to protect personal data. Recently, regulation suchas the General Data Protection Regulation (GDPR) in Europe formalised an assumption that private citizens seek control over privacy by defining a comprehensive list of rights and thereby encouraging trust in those processing their data. Nonetheless, others maintain that such attempts at empowering private individuals do not reflect their expectations nor common data sharing practice. Based on a survey derived from a series of workshops with a group interested in patient data privacy, 466 private citizens in the UK shared their attitudes to data sharing and data protection structures. What they discussed compared well with provisions of the GDPR: regulation seems to capture private citizen concerns.Extending the analysis via exploratory factor analysis with 444 response sets, however, we provide evidence that private citizens continue to be overwhelmed by privacy and may not appreciate how much control they really have. Indeed, they report lacking agency regarding their data. Further, data sharing decisions appear to be the result of a pragmatic motivation to achieve a specific task. We conclude that private citizens do not believe they maintain control of their data but act as privacy pragmatists, basing data sharing decisions on transactional motivations and soft trust rather than any statutory rights as set out in data protection regulation
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