Data linkage

With the showers has come a certain malaise tinged with queasy uncertainty.

This could be a post-Bill slump in the NHS, a response to the long grind of making cuts with no end in sight, and the sheer weight of detail to be worked through with respect to the mass reorganisation outlined in the now Health and Social Care Act.

The queasiness extends beyond health, look at local Government for example facing an average six per cent cuts rather than a ‘flat real’ settlement as in health.

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Within the research group of the Nuffield Trust we have a number of studies that use the anonymised linkage of health and social care records. The results of one study are due to be published in the Journal of Health Services Research and Policy (JHSRP) soon but they have left us with a puzzle.

We found that from a population of older people (aged 75+) in four local authority areas, 14 per cent used some form of local authority social care over a one year...

Last month, the Department of Health confirmed that it was ditching its plans for a single clinical record system for England. Instead, IT policy will be devolved to local NHS organisations. On the face of it, this new emphasis on local flexibility may sound appealing but we should not forget the potential hazards that come with fragmented IT.

The original plan would in essence have created a single set of medical records for all patients, to which patients could grant access to clinicians working in any part of the NHS. The alternative we are now facing will be a separate, partial...

Last month, the Commons’ public accounts committee published a pretty damning report on the NHS National Programme for IT in England, Connecting for Health.  The committee’s analysis looked specifically at the development of a single care record.  This is a set of electronic notes for each patient that can – with the patient’s permission – be accessed by clinicians working in different parts of...

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...

This week, the summary care record is back in the news.  At the moment, if you become critically unwell and are taken unconscious to an A&E department, the doctors and nurses looking after you will typically have no idea of your past medical history, your allergies or what medicines you are taking. This is because they usually have no way of accessing your GP clinical record....

Most interactions you might have with any organisation leave behind a trail of data. In health care, these datasets have many uses and the Nuffield Trust is interested in ways that we can exploit them to inform health policy.

We are particularly interested in how linkage between data sets can reveal a fuller picture of what is happening to people as they use services.  We refer to this as a “data laboratory”, and use this in evaluation and in developing models that predict the likelihood of future events. 

Session three of the Nuffield Trust’s 2011 Health Strategy...

The latest Nuffield Trust report has been a long time in gestation.  It is an important piece of work for us as it signalled our first attempts to link together health and social care information at a person level.

The idea behind this work was very simple.  Can we identify people who are at high risk of needing high cost social care in the coming year?  If we can, then we stand a better chance of targeting prevention strategies to help people now.  The result is better quality of care in the short term and lower costs so...

At the Nuffield Trust we have just published a report that uses routine information to offer a new perspective on care services at the end of life.  We were aware of the importance of end of life care, both in terms of problems in the quality of services and the costs of these services.  We also know it’s an area where there is limited information yet a lot of national interest.

Following a meeting with Mike Richards, the National Clinical Director for End of Life Care, and the National End of Life Care Programme team, it became clear...