The medical data revolution is good for your health

The medical data revolution is good for your health


No change is ever easy. The front-page headline in The Daily Telegraph yesterday – “NHS admits new medical records database could pose privacy risk” – exemplifies broader worries over the latest developments in health care, which is undergoing a quiet revolution being driven by use of data.


With the NHS using patient data from GPs to provide a more complete national picture of our health needs, many are understandably skittish about the threat of Whitehall snooping at their medical history. Such fears are perfectly natural. We must do everything to ensure a robust regime that will protect data from hacking and from any potential misuse. But at the same time, we must not block life-saving advances.


The Telegraph story highlighted an extract from an internal risk analysis published last month – but it doesn’t mean what it warned about is going to happen. A similar risk analysis of flying would conclude that there is a chance of a plane crash: it doesn’t mean everyone should flee the airport. Yes, there are dangers surrounding the use and sharing of any data. Yet we do it every day, whenever we use online banking, or the internet as a whole. If we are content to have every item of our spending in digital form, then the idea that our medical information should also be of some use doesn’t seem quite so outlandish.


Health data have been collected since the Eighties, with every hospital admission nationwide tracked. – the new programme from NHS England, where data are being brought together at the Health and Social Care Information Centre (HSCIC) – is merely expanding the system to cover out-of-hospital care, such as prescriptions and GP test results. This isn’t a sudden harvesting of patient information, but a completion of what is already there, to provide a better-informed health service that, in turn, benefits patients. The HSCIC is legally prohibited from making a profit from providing data; it is unlawful to make confidential information available for the purposes of selling any kind of insurance; and it can only ever be disclosed where allowed by law, as in a public health emergency or with explicit patient consent.


It is not only that the new system is safe, but that the benefits for patients are too good to lose. Take medical research. Data collection allows researchers to look at large-scale patterns of disease and drug performance over 30 years. This enables them to change prescription patterns, to pick the right recruits for specific drug trials and to collect a lot more “lifestyle” information (on diet, exercise etc) which is invaluable in trying to understand patterns of cause and effect.

I saw this for myself when I was involved in a project with King’s College London. MRI brain scans and medical histories from 250,000 patients in the South London Mental Health Trust were put into one database, which academic researchers are now able to study – in anonymised form – to find new treatments for hard-to-treat diseases such as schizophrenia and depression.


Better data can lead to new drugs, better treatments and more lives saved. It can also transform research, and help to shed a light on poorly performing hospitals, making sure scandals such as Mid Staffordshire can never happen again. And it can empower patients. No one today would be content to be denied access to their banking records. Nor should they put up with being kept in the dark on their health: we need to move health from being something done to you by government to something citizens take responsibility for themselves.


In fact, while is a good start, we need to go much further. Ten years ago, the first human genome was sequenced at the Sanger Centre, a mile to the south of Cambridge. It took £100 million and more than 10 years of focused scientific effort. Today, breakthroughs in genetics and computing make it possible to sequence a human genome for £1,000 in 24 hours.


Clinics are appearing around the world offering personalised cancer therapy, with drugs tailored to your specific condition. This is vital, because the more we discover about medicine, the more we realise that our current pharmaceutical model is broken. It turns out that different patients respond to different diseases and drugs in different ways – so plying everyone with the same cure no longer works. The result is that we are wasting billions giving the wrong drugs to the wrong patients. Personalised and genetically tailored medicines would fix that.


From the invention of the railways to the launch of the internet, the future has always seemed a threat to the present. But the simple question remains: who wants to live better for longer? With the proper precautions in place, this data revolution is a force for good. We should embrace it.



By George Freeman,


The Telegraph, the 17th of February, 2014.


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