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.
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.
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.
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.