On 1 July, the National Health Service (NHS), Britain’s healthcare system that deals with the overwhelming majority of UK patients, will start pooling primary care records in England to make them accessible to third parties.
This will involve data about as many as 55m people kept in digital form for decades by general practitioners.
NHS digital, which runs the health system’s IT, says the data will be pseudonymised: it can’t be used to identify individual patients who will be able to opt out. NHS Digital says it does not sell data but that it does charge organisations for access.
The Financial Times (FT) denounced the move in an editorial on 27 May.
“There is no good reason for rushing an exercise with vast privacy implications,” it said. “The government must properly explain how patient data may be used and by whom. Otherwise, the risk is that the public understandably views a potentially worthwhile project with distrust, and the NHS’s brand becomes tarnished through no fault of frontline workers.”
For most businesses, trade in data is an established practice. Media companies like the FT buy millions of names — data sets usually including telephone numbers, email co-ordinates and addresses — every year. These are used to support direct mailing and telesales. Without heavy expenditure on marketing data, The FT’s subscriber numbers would inevitably dwindle, probably by at least 10 per cent, every year.
The NHS says that’s not its plan. Presumably it will lease large data sets which contain health conditions, age, gender, occupation, ethnicity, sexuality and other patient facts and their trends over time. It’s likely the buyers will use the information to spot patterns that might facilitate more effective targeting of R&D budgets. It’s almost certain they will sell some of their analysis back to the NHS.
The truth is that this exercise is neither so sensitive nor as potentially profitable as critics like the FT suppose. No one is going to be able to use the data to phone up a patient with diabetes to sell a new treatment or insurance.
And data sets, despite recent hyperbole, aren’t as valuable as is often thought.
I know my son’s telephone number, email and postal address. This is very useful; in fact vital for me to maintain a healthy relationship with him and his family. The same information is worth almost nothing to someone who doesn’t know him.
Even data with an industrial tag – he’s a lawyer – is barely more attractive. A company knowing that might be able to offer him some relevant service but experience shows that not even a highly-qualified list of potential customers will produce a buyer more than a fraction of 1 per cent of the time.
The most important data lesson for any one in business is that customer information is far more useful to someone with a relationship to that customer than to anyone else. So the big tip to a business is: don’t sell your customer data. Use it yourself.
That is the proper response to the NHS initiative. Not only will it fail to make money for the health service, it is the most valueless way of capitalising on a relationship that every public opinion survey shows is one of the most strongly felt in the UK.
People love the NHS and are happy to pay for it through taxation. That relationship managed properly could open the door for the NHS on its own to use its mass of data constructively and even profitably.
The biggest consequence of the NHS data set plan is that it will undermine that relationship by raising in people’s minds doubts about the security of their most intimate secrets.
If anything will kill the NHS, it will be that.