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Int J Med Inform. 2015 Nov;84(11):933-40. doi: 10.1016/j.ijmedinf.2015.08.011. Epub 2015 Aug 24.

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

Author information

1
Mason Institute, School of Law, University of Edinburgh, UK.
2
Centre for Health Informatics, Institute of Population Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
3
Swansea University Medical School, UK.
4
Centre for Health Informatics and Multiprofessional Education, University College London, UK.
5
Mason Institute, School of Law, University of Edinburgh, UK. Electronic address: nayha.sethi@ed.ac.uk.

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.

KEYWORDS:

Data linkage; Electronic health records; Health research; Information governance; Secondary uses

PMID:
26342668
PMCID:
PMC4595999
DOI:
10.1016/j.ijmedinf.2015.08.011
[Indexed for MEDLINE]
Free PMC Article

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