Inside Whitehall: Care.data will help prolong our lives and those of our children

In any scheme of this nature there is a trade-off between privacy and better health

Share

A year or so ago I was talking informally to a senior hospital clinician who was facing a conundrum. Her hospital had recently carried out a piece of research comparing its cancer survival rates with those of neighbouring trusts. What they found shocked them.

They discovered that patients referred to them for certain types of cancer treatment were more than twice as likely to be alive five years later than those referred to another hospital nearby. A potentially fatal disparity of care. But the hospital then carried out a case-note audit and found something they had not expected – the cancer in the patients they had seen was far less advanced than it was in the patients treated by the neighbouring hospital.

The conundrum was this: was the discrepancy due to the stage at which patients reported to their GP with symptoms or, more worryingly, was it due to variations in initial diagnosis? I was reminded of this last week when the NHS announced the (so far temporary) demise of plans to create the world’s first centralised database of the medical records of every patient in England.

That database would solve this conundrum and many others like it and potentially save or prolong many lives. But it is now in peril. So what exactly is Care.data and why have things gone wrong?

At its heart is a simple conceit: that good medicine is often determined by good data. The first links between smoking and lung cancer, for example, were established by large-scale studies which proved a connection irrefutably. Equally, the opening up of hospital data over the last 10 years helped expose the Mid-Staffs scandal and has driven improvements in hospital care.

But there is one gaping hole in this knowledge that Care.data is due to fill: access, in useable form, to our complete medical records from cradle to grave.

The medical potential for such a resource is huge. The new database will allow researchers to examine health outcomes for the first time at GP practice level. The NHS will be able to see who is getting what treatment and how effective it is. Not only that, they will be able to identify which GPs are over-prescribing antibiotics; which are using expensive branded drugs instead of cheaper alternatives; and how many times a patient is seen before they are eventually diagnosed.

On a broader level, if there are suspicions that a new drug may be having unintended or damaging side effects (think thalidomide) then it will be possible, almost at the touch of a button, to identify everyone who has been prescribed that drug to see if they have reported problems.

In short, Care.data will help prolong our lives and those of our children. So why has it been so controversial? The answer is a mixture of chronic mishandling by the NHS and overblown privacy concerns.

Those behind the scheme have been so evangelistic about it that they seem to have forgotten the need clearly to explain to the public why it is important. As a result, the public debate has all been about who might legally and illegally get access to our patient records and how they might misuse them.

The truth is that in any scheme of this nature there is a trade-off between privacy and better health. But having looked into the safeguards that are in place to anonymise data and protect privacy, the answer to me is clear. Care.data has far more potential to help than to hurt – and should start as soon as possible.

React Now

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

Recruitment Genius: Account Manager

£23000 - £25000 per annum: Recruitment Genius: This company has over 40 years ...

Recruitment Genius: Weekend Factory Operatives

£9 per hour: Recruitment Genius: This high quality thread manufacturer is curr...

Recruitment Genius: FP&A Analyst

£40000 - £55000 per annum: Recruitment Genius: A market leading acquirer and m...

Recruitment Genius: Electricians

£35000 - £45000 per annum: Recruitment Genius: Fully qualified electricians re...

Day In a Page

Read Next
 

Daily catch-up: the Labour leadership election hasn’t yet got to grips with why the party lost

John Rentoul
Kennedy campaign for the Lib Dems earlier this year in Bearsden  

Charles Kennedy: A brilliant man whose talents were badly needed

Baroness Williams
Sepp Blatter resignation: The beginning of Fifa's long road to reform?

Does Blatter's departure mean Fifa will automatically clean up its act?

Don't bet on it, says Tom Peck
Charles Kennedy: The baby of the House who grew into a Lib Dem giant

The baby of the House who grew into a Lib Dem giant

Charles Kennedy was consistently a man of the centre-left, dedicated to social justice, but was also a champion of liberty and an opponent of the nanny-state, says Baroness Williams
Syria civil war: The harrowing testament of a five-year-old victim of this endless conflict

The harrowing testament of a five-year-old victim of Syria's endless civil war

Sahar Qanbar lost her mother and brother as civilians and government soldiers fought side by side after being surrounded by brutal Islamist fighters. Robert Fisk visited her
The future of songwriting: How streaming is changing everything we know about making music

The future of songwriting

How streaming is changing everything we know about making music
William Shemin and Henry Johnson: Jewish and black soldiers receive World War I Medal of Honor amid claims of discrimination

Recognition at long last

Jewish and black soldiers who fought in WWI finally receive medals after claims of discrimination
Beating obesity: The new pacemaker which helps over-eaters

Beating obesity

The new pacemaker which helps over-eaters
9 best women's festival waterproofs

Ready for rain: 9 best women's festival waterproofs

These are the macs to keep your denim dry and your hair frizz-free(ish)
Cycling World Hour Record: Nervous Sir Bradley Wiggins ready for pain as he prepares to go distance

Wiggins worried

Nervous Sir Bradley ready for pain as he prepares to attempt cycling's World Hour Record
Liverpool close in on Milner signing

Liverpool close in on Milner signing

Reds baulk at Christian Benteke £32.5m release clause
On your feet! Spending at least two hours a day standing reduces the risk of heart attacks, cancer and diabetes, according to new research

On your feet!

Spending half the day standing 'reduces risk of heart attacks and cancer'
With scores of surgeries closing, what hope is there for the David Cameron's promise of 5,000 more GPs and a 24/7 NHS?

The big NHS question

Why are there so few new GPs when so many want to study medicine?
Big knickers are back: Thongs ain't what they used to be

Thongs ain't what they used to be

Big knickers are back
Thurston Moore interview

Thurston Moore interview

On living in London, Sonic Youth and musical memoirs
In full bloom

In full bloom

Floral print womenswear
From leading man to Elephant Man, Bradley Cooper is terrific

From leading man to Elephant Man

Bradley Cooper is terrific