Your NHS life story should not be put on hold

The NHS needs to communicate its data programme carefully to ensure it isn't misconstrued - or shelved.

One of the best things about the NHS, but also one of the most overlooked, is its tenacity. It’s a shame that the same can’t be said about those who run it.

In February the NHS Care.data programme, a scheme where GP records in England would be put on a database and combined with other data to improve care, was put on hold.

Many who see this as a vital opportunity are fearful that it will now never see the light of day. But why go to the trouble of collecting and sharing this data in the first place?

That’s where the tenacity comes in. From the moment your first nosebleed propels you and your mother to the GP, through to whatever climactic clinical cataclysm leads to your demise, everything that happens to you within the NHS system has the potential to be linked within your health record via your unique, ten-digit NHS number.

This creates a narrative to your life; a story detailing what went right, what went wrong, and everything in between. Combine this information from millions of patients and you have a hugely powerful database.

Ultimately, analysis of this vast pool of information could bring untold benefits to patient care.

It’s easy to understand why the Department of Health, statisticians and much of the medical profession – not to mention insurance companies and even pharmaceutical companies –  would be keen to get hold of this data.

So why didn’t Britain’s worried well welcome this initiative with open arms? That’s where PR comes in, or rather, it didn’t.

Looking through the retrospectoscope, it’s obvious that despite the assurances made about confidentiality, when a fait accompli was announced stating that unless an individual opted out, all of their medical past could be shared with almost any interested medical party, it was bound to cause concern.

As Dame Fiona Caldicott, chairwoman of the Independent Information Governance Oversight Panel, told the BBC recently, "there was too much hurry" and the public information campaigns announcing Care.data were just not clear enough.

To my mind, medical pugilist Ben Goldacre writing in The Guardian expressed the issue most eloquently: "Breaks my heart. I love big medical datasets… and I can think of a hundred life-saving uses for better ones. But patients’ medical records contain secrets, and we owe them our highest protection."

The truth is, any society that has lived outside of dictatorship for any length of time despises being made to do things, no matter how great the benefit.

To have any chance of achieving the success it deserves, a re-introduced Care.data programme must be supported comprehensively by well planned, researched PR and a tailored advertising campaign.

The media have to be helped to understand the realities of this particular risk/benefit equation and encouraged to see Care.data as a solution, not a problem.

Only time will tell if the NHS can make that diagnosis too, and keep hold of what really is a wonderful idea.

Dr Martin Godfrey is managing director of 3 Monkeys Communications Health and Wellness, and a south London GP

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