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

International Journal of Medical Informatics
G LaurieN Sethi

Abstract

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. 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. This article suggests that a crucial element in any step-increase of research capability will be the adoption of adaptiv...Continue Reading

Citations

Apr 9, 2017·BMC Medical Ethics·John M M Rumbold, Barbara K Pierscionek
Apr 2, 2019·Nature Human Behaviour·Tom C RussUNKNOWN MQ Data Science group
Aug 23, 2019·Journal of Medical Internet Research·Kerina H JonesDavid V Ford
Jul 16, 2021·Health Care Analysis : HCA : Journal of Health Philosophy and Policy·Catherine Blewett

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