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On moving targets and magic bullets: Can the UK lead the way with responsible data linkage for health research?

Laurie, G; Ainsworth, J; Cunningham, J; Dobbs, C; Jones, KH; Kalra, D; Lea, NC; (2015) On moving targets and magic bullets: Can the UK lead the way with responsible data linkage for health research? International Journal of Medical Informatics , 84 (11) pp. 933-940. 10.1016/j.ijmedinf.2015.08.011. Green open access

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Abstract

PURPOSE: To provide an overview of essential elements of good governance of data linkage for health-related research, to consider lessons learned so far and to examine key factors currently impeding the delivery of good governance in this area. Given the considerable hurdles which must be overcome and the changing landscape of health research and data linkage, a principled, proportionate, risk-based approach to governance is advocated. DISCUSSION: In light of the considerable value of data linkage to health and well-being, the United Kingdom aspires to design and deliver good governance in health-related research. A string of projects have been asking: what does good governance look like in data linkage for health research? It is argued here that considerable progress can and must be made in order to develop the UK's contribution to future health and wealth economies, particularly in light of mis-start initiatives such as care.data in NHS England. Discussion centres around lessons learned from previous successful health research initiatives, identifying those governance mechanisms which are essential to achieving good governance. CONCLUSION: This article suggests that a crucial element in any step-increase of research capability will be the adoption of adaptive governance models. These must recognise a range of approaches to delivering safe and effective data linkage, while remaining responsive to public and research user expectations and needs as these shift and change with time and experience. The targets are multiple and constantly moving. There is not--nor should we seek--a single magic bullet in delivering good governance in health research.

Type: Article
Title: On moving targets and magic bullets: Can the UK lead the way with responsible data linkage for health research?
Location: Ireland
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.ijmedinf.2015.08.011
Publisher version: http://dx.doi.org/10.1016/j.ijmedinf.2015.08.011
Language: English
Additional information: © 2015 The Authors. Published by Elsevier Ireland Ltd. This is an open access article under the CC BYlicense (http://creativecommons.org/licenses/by/4.0/).
Keywords: Data linkage, Electronic health records, Health research, Information governance, Secondary uses
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > CHIME
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
URI: https://discovery.ucl.ac.uk/id/eprint/1474705
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