Information governance

Even its best friends will grudgingly admit that information governance is not a topic that grabs you by the lapels and demands your attention.

That is, however, until some brave soul attempts to tweak the laws and directives around the use of data in the UK, at which point the issue suddenly becomes extremely interesting.

The latest intervention in this area, the most important for some years, comes from an independent working party headed up by Dame Fiona Caldicott (of the original...

There are three requirements for entrepreneurship to flourish: the capacity to invest and innovate; the autonomy to make decisions over resources; and the confidence that the fruits of success can be retained, either by the individual or the enterprise. Of course, these conditions are usually in place in properly functioning conventional markets, allowing entrepreneurs to invest, innovate and reap the rewards of success.

In a recent Nuffield Trust seminar however,...

The potential value to the NHS of learning from the international experience of the electronic medical record (EMR) system, VistA, was identified in the January 2002 NHS Information Authority White Paper:Open Source Software and the NHS.

Ten years on, and several billion pounds of investment later, the NHS is still without a satisfactory comprehensive electronic medical record system.

Open-source software has gone from strength to strength...

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...