Putting care.data into context

Written by Jenny Lewis on . Posted in Features

Since 1989 information about our hospital visits has been collected and made available to organisations inside and outside the NHS. This information is used to help hospitals improve their services and for external bodies to assess the quality of those services. For example, the Care Quality Commission (CQC), which regulates the NHS, relies on this information to highlight potential problems with hospitals - over 70% of the indicators in the CQC's new Intelligent Monitoring rating come from the same hospital based data set (known as the Hospital Episode Statistics, or HES).

Dr Foster (where I am head of analytical research) has been using this information for over 10 years to provide the public and health professionals with information on variation in the quality of hospital care, to both inform and drive up standards. It is very difficult to work out where problems or excellence lie and where to focus improvement effort without good information. The availability of this information has therefore been a central driver for improvement in the quality of our hospitals.

Presently, this data is focused on hospital care, which is only a slice of the whole health system. This means we don’t have any reliable data about GP practice performance, for example, or nothing to help us assess the standards of care that occurs in people's homes. Only a relatively small proportion of the population spend significant time in hospital, and many have never required hospital care. But almost everyone will have been to see a GP. What do we know about this care? Currently, almost nothing.

The new care.data scheme aims to correct this bias and gather together data from across the healthcare system. This will allow a true analysis of the quality of organisations other than hospitals. Importantly, it will also allow us to look at pathways of care across our healthcare system – such as looking at what went wrong before the patient was referred to hospital in an area there has been a big jump in hospital admissions. We could also look at the quality of follow-up care after discharge from hospital. It will also include further information about hospital care, allowing us to analyse levels of diagnostic tests and their efficiency.

The availability of care.data will shine a light on those parts of the NHS that are currently invisible to proper analysis. Ultimately, we will be able to see how the whole health care system is working, and where small changes could dramatically improve the patient experience, and reduce inefficiencies in an increasingly pressurised NHS. Hospital care is expensive and if we can improve services outside the hospital we should be able to keep people out of hospital beds and in their own homes. This is generally where people prefer to be and, as money is increasingly squeezed, it is also the best place for them to be treated.

So given all this, why the furore? The information in this new dataset will originate from individual patient records. People are therefore understandably concerned about their privacy. What occurs in a GP appointment should stay there.

Therefore, before being released to any non NHS researcher or analyst this data will be anonymised. All identifiable fields will be stripped from the record and the patient identifier replaced with a pseudocode. This pseudocode allows us to links records together, but provides no personal information.

The NHS has been doing this for years. This is exactly how the current hospital level data is anonymised and it works well. It allows the researcher the flexibility to interrogate and use the data to best effect whilst maintaining patient privacy. There are also a suite of governance rules that prevent the linking of the data to other datasets and the publication of anything that could be identifiable. Admittedly there is a risk. If you know the exact details of the patient and their care then it is possible to make a good guess as to which record it may be. This is a small risk in a sea of regulation and mitigation and is surely outweighed by the potential benefits to our health.

The need for information to drive high quality care is a worldwide issue. The major US hospital networks pride themselves on their quality and are also major hubs for data collection and interpretation. We have a huge opportunity to gather together the best information of any national healthcare system in the world. The potential for improving our health is huge.


The views expressed in the Opinion section of StatsLife are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of The Royal Statistical Society.

Health & Medicine National Health Service care.data Data privacy

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