ORCID Profile
0000-0002-8054-7721
Current Organisations
University of Western Australia
,
University of Oxford
Does something not look right? The information on this page has been harvested from data sources that may not be up to date. We continue to work with information providers to improve coverage and quality. To report an issue, use the Feedback Form.
Publisher: Elsevier BV
Date: 04-2018
Publisher: Swansea University
Date: 02-04-2019
Abstract: IntroductionAnalysis of linked health data can generate important, even life-saving, insights into population health. Yet obstacles both legal and organisational in nature can impede this work. ApproachWe focus on three UK infrastructures set up to link and share data for research: the Administrative Data Research Network, NHS Digital, and the Secure Anonymised Information Linkage Databank. Bringing an interdisciplinary perspective, we identify key issues underpinning their challenges and successes in linking health data for research. ResultsWe identify ex les of uncertainty surrounding legal powers to share and link data, and around data protection obligations, as well as systemic delays and historic public backlash. These issues require updated official guidance on the relevant law, approaches to linkage which are planned for impact and ongoing utility, greater transparency between data providers and researchers, and engagement with the patient population which is both high-profile and carefully considered. ConclusionsHealth data linkage for research presents varied challenges, to which there can be no single solution. Our recommendations would require action from a number of data providers and regulators to be meaningfully advanced. This illustrates the scale and complexity of the challenge of health data linkage, in the UK and beyond: a challenge which our case studies suggest no single organisation can combat alone. Planned programmes of linkage are critical because they allow time for organisations to address these challenges without adversely affecting the feasibility of in idual research projects.
Publisher: T.M.C. Asser Press
Date: 2019
Publisher: Swansea University
Date: 12-06-2018
Abstract: BackgroundThe ‘deficit’ model of engagement, which educates the public about research, has been subject to increasing criticism, as if people’s attitudes arise from ignorance which should be corrected. Nevertheless, a number of attempts to understand public views on the use of Administrative Data for research have used informative models. This can be problematic from a legal perspective, as the law is concerned with data subjects’ ‘reasonable expectations’, not their hypothetical expectations had they received more information. Recent controversies around reasonable expectations have included Google DeepMind and Royal Free, as well as Cambridge Analytica. ObjectivesThis paper considers how public engagement can help administrative data controllers meet their legal obligations when data are processed for research, and how to avoid confusion by placing too much reliance on the views of informed participants as a means of gauging wider public opinion. MethodsWe refer to the findings of an exploratory study of in idual attitudes towards Administrative Data Research, which indicate that views and norms around ADR are incipient and ambivalent, especially when compared to perceptions of ‘conventional’ medical research. We consider the legal obligations administrative data controllers have to shape reasonable expectations in light of this uncertainty. FindingsEngagement which informs the public about research does have value. It indicates what the attitudes of the public might be, were certain facts about research more commonly known, and thus underscores the importance of public information c aigns. However, this work cannot provide an accurate representation of public opinion as a whole in the absence of wider dissemination of information across society. ConclusionsThere will inevitably be a number of facets to public engagement: information, representation and transparency. Each of these will correlate differently with data controllers’ legal obligations, and it is essential to understand these connections.
Publisher: Oxford University Press (OUP)
Date: 15-07-2019
DOI: 10.1093/IDPL/IPZ010
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Hannah Smith.