Tesco Clubcard founder worried about Care.data

One of Britain’s pioneers of big data has raised his concerns about NHS England’s use of data and its Care.data programme

One of Britain’s pioneers of big data has raised concerns about NHS England’s use of data and its Care.data programme.

Clive Humby, now chief data scientist at Starcount, said the Care.data roll-out worries him and, while he admitted a national system has the power to do a huge amount of good, the NHS is risking it all because it has been so badly managed.

“Just because we can do things,” he said. “Doesn’t mean we should.”

In 1989 Humby co-founded Dunhumby, the company behind the Tesco Clubcard, which was one of the first examples of using big data in retail.

Speaking at the Big Data Breakfast in London this morning, Humby warned about the consumer backlash that comes when big data isn’t used correctly and privacy is threatened.

This echoed the controversies surrounding the Care.data programme and its plans to expand the collection of patient care data from hospitals to include general practices.

The furore came to a head in February when failure to explain the benefits to the general public forced the NHS to put plans on hold for six months.

NHS England has since admitted it has failed to explain the benefits of care.data to patients.

Humby said NHS England needs to understand the limits and the societal norms citizens are willing to accept. “You don’t have to just educate the technologist, but the society,” he added.

He also said that he had been part of a tongue-in-cheek debate a few years ago about who should run the health service, Tesco or the government. He explained that, while Tesco uses consumer data to improve the company, it only offered customers promotions that were right for them, so it was a “win-win" situation.

“The advantage of the grocery market is it is pretty safe, and everyone gets the deal,” he said. “If you manipulate the consumer too much, it could end up with backlash,” he said.

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"The furore came to a head in February when failure to explain the benefits to the general public forced the NHS to put plans on hold for six months.

NHS England has since admitted it has failed to explain the benefits of care.data to patients."

And NHS England still hasn't told the general public what the benefits are, beyond the frankly derisory leaflet I received bundled in the middle of a pile of junk mail for the initial roll out, there hasn't been any communication with me, nor with anyone I know.

I suspect that they are waiting for the issue to lose public focus and are quietly going to go ahead requiring a new and different 'opt out' to be requested by patients, who won't know about the requirement until it's too late.

Now before anyone accuses me of being a Luddite, I have no objection to my medical data being uploaded to HSCIC and used for research purposes.

What I object to is my medical data being sold on to third parties such as insurance and other non medical companies, as has already happened with the hospital data grab, we are assured this won't happen again but that horse has bolted already.

I further object to there being no way I can find out who has received my intimate, personal medical record, anonymisation does not work, given DOB, gender & postcode 99.9% of the population can be identified, and the remaining 0.1% can be identified by elimination, so whoever gets their hands on my records will know everything about me but I will know nothing about them.

I have a final objection in using 'opt out' at all, if this scheme is so good, tell us about it and let us decide to join using 'opt in', 'opt out' is just a cheap way of grabbing data without informed consent and as far as I'm concerned should be illegal.

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