Information governance

In 2010 the Nuffield Trust invited Dr Sarah Clark and Professor Albert Weale from University College London to look at the current regulations relating to the use of NHS data by researchers and analysts and to reflect on the social values such regulations invoke. 

Their full report, together with a summary from the Nuffield Trust that explores the issues, can be downloaded from the publications area of our website.

One of the elements of Clark and Weale’s report that I found particularly striking was their argument from public benefit.  As they...

Benedict’s comments are very thought provoking, and his concerns about the data subject in the ‘public benefit’ model are particularly important.  To be clear, though, ‘public benefit’ may be a misleading term for our approach.

What we seek to do is to balance the interests of individual data subjects in privacy and autonomy with the collective interests of society in more and better health research, rather than to give either of those interests priority, as we argue the current ‘consent or anonymise’ regime does.

Still, the predominance...