The UK has a lorra lorra data and this is how it’s handling it in medical research

Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2).  Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research.  You can read the full report here and, in my view, it is sound on the use of patient data for research purposes. It is also good that the Government has asked her to lead the group that will monitor implementation of her recommendations.  They will need a firm but guiding hand that’s for sure.

The fact is that the UK has a whole lot of data – often called ‘Big Data – and the issue is how to get better at using it.

Today the Science Minister, David Willetts MP, opened a new £30M facility in Oxford called ‘The Big Data Institute’ (Do you think that they have signs up for visitors warning them not to bump into the oversize numbers walking through the lobby?).  Earlier in the week he also launched the UK’s four new e-Health Informatics Research Centres (e-HIRCs) and Network at a conference at the Royal College of General Practitioners (RCGP) in its new surroundings.  The four centres will be in Scotland, Wales, the North and London.

Their role: to make health informatics work for medical research and for patient benefit, to enable us to crunch the numbers so to speak and mould them into new pills or new ways of delivering care. They have a HIRCulean task ahead of them!

I was tweeting merrily from the conference on Wednesday afternoon because I was so pleased to hear the head of the Network, Andrew Morris, and the leaders of the four new Centres, Professors Ian Buchan (North), Ronan Lyons (Wales), Harry Hemingway and; Jill Pell (Scotland) all talk about the priority will be given to public involvement and engagement.  The proof will be in the eating of the pudding of course.  The danger for any network is that it becomes introvert and fails to grapple with the practical applications of what it is doing.

During yesterday’s conference proceedings I chaired two workshops.  In each, the question of people having access to their medical records cropped up.  Also how this might hinder or assist in improving the quality off data held about them.  The Government has said that everyone will have online access to their medical records by 2015 and that this is a non-negotiable for the NHS.  But the level of caution and nervousness in some corners of both workshops was palpable.  It is a little like listening to Euro-sceptics.

This is a shame because the UK has so much going for it when it comes to the knowledge, expertise and infrastructure it has developed just to make sense of the increasing amounts of data in our own health and social care system.  This and the very fact of 60 million + people sharing the same health service puts us in a remarkably advantageous position.  If only we could also embrace how patients could be partners in this whole project.  Our US colleagues would love to be able to work with a system such as ours.  However, they more than make up for it with the way they think about the citizen being at the heart of their endeavour.

Professor Sam Their from Harvard University put it best when he urged us to wake up to the fact that health system will be faced with a ‘more technically sophisticated, inquisitive and informed public’ than ever before.

……By the way, this seems as good a moment as any to remind people of the excellent ‘Your health record saves lives’ leaflet which was designed by the UK Clinical Research Collaborations (UKCRC) partners with patients and is available from here.  It explains how people’s medical records are used, gives some case examples of the benefits have come from it and talks about the risks and where you can get more information……

 

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