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: Panel & Cabinet Wireman

£20000 per annum: Recruitment Genius: Panel Wireman required for small electro...

Recruitment Genius: Electronics Test Engineer

£25000 - £27000 per annum: Recruitment Genius: An SME based in East Cheshire, ...

Recruitment Genius: Marketing Assistant

£18000 - £22000 per annum: Recruitment Genius: Do you have previous experience...

Recruitment Genius: Accounts Administrator

£16000 - £18000 per annum: Recruitment Genius: This is an exciting opportunity...

Day In a Page

Read Next
Shia LaBeouf is one of Brad Pitt's favourite actors in the world ever, apparently  

Shia LaBeouf to Luis Suárez: Introducing my anti-heroes of 2014

Ellen E Jones
Gwyneth Paltrow and Coldplay's Chris Martin “consciously uncoupled” in March  

My best and worst stories of 2014

Simmy Richman
War with Isis: The West needs more than a White Knight

The West needs more than a White Knight

Despite billions spent on weapons, the US has not been able to counter Isis's gruesome tactics, says Patrick Cockburn
Return to Helmand: Private Davey Graham recalls the day he was shot by the Taliban

'The day I was shot by the Taliban'

Private Davey Graham was shot five times during an ambush in 2007 - it was the first, controversial photograph to show the dangers our soldiers faced in Helmand province
Revealed: the best and worst airlines for delays

Revealed: the best and worst airlines for delays

Many flyers are failing to claim compensation to which they are entitled, a new survey has found
The stories that defined 2014: From the Scottish independence referendum to the Ice Bucket Challenge, our writers voice their opinions

The stories that defined 2014

From the Scottish independence referendum to the Ice Bucket Challenge, our writers voice their opinions
Stoke-on-Trent becomes first British city to be classified as 'disaster resilient' by the United Nations

Disaster looming? Now you know where to head...

Which British city has become the first to be awarded special 'resilience' status by the UN?
Finally, a diet that works: Californian pastor's wildly popular Daniel Plan has seen his congregation greatly reduced

Finally, a diet that works

Californian pastor's wildly popular Daniel Plan has seen his congregation greatly reduced
Say it with... lyrics: The power of song was never greater, according to our internet searches

Say it with... lyrics

The power of song was never greater, according to our internet searches
Professor Danielle George: On a mission to bring back the art of 'thinkering'

The joys of 'thinkering'

Professor Danielle George on why we have to nurture tomorrow's scientists today
Monique Roffey: The author on father figures, the nation's narcissism and New Year reflections

Monique Roffey interview

The author on father figures, the nation's narcissism and New Year reflections
Introducing my anti-heroes of 2014

Introducing my anti-heroes of 2014

Their outrageousness and originality makes the world a bit more interesting, says Ellen E Jones
DJ Taylor: Good taste? It's all a matter of timing...

Good taste? It's all a matter of timing...

It has been hard to form generally accepted cultural standards since the middle of the 19th century – and the disintegration is only going to accelerate, says DJ Taylor
Olivia Jacobs & Ben Caplan: 'Ben thought the play was called 'Christian Love'. It was 'Christie in Love' - about a necrophiliac serial killer'

How we met

Olivia Jacobs and Ben Caplan
Bill Granger recipes: Our chef's breakfasts will revitalise you in time for the New Year

Bill Granger's healthy breakfasts

Our chef's healthy recipes are perfect if you've overindulged during the festive season
Transfer guide: From Arsenal to West Ham - what does your club need in the January transfer window?

Who does your club need in the transfer window?

Most Premier League sides are after a striker, but here's a full run down of the ins and outs that could happen over the next month
The Last Word: From aliens at FA to yak’s milk in the Tour, here’s to 2015

Michael Calvin's Last Word

From aliens at FA to yak’s milk in the Tour, here’s to 2015