Original URL: http://www.theregister.co.uk/2014/02/18/bma_adds_voice_of_concern_to_growing_attack_on_poorly_publicised_care_data_scheme/

Top Brit docs wade into GP data grab row, demand 'urgent' NHS England talks

Ill-informed patients deserve to know more about care.data, says BMA

By Kelly Fiveash

Posted in Government, 18th February 2014 12:39 GMT

Pressure is mounting on NHS England to stall its incoming data grab of GP-stored medical records, after another health body said that the government needed to improve public awareness of the controversial scheme.

A stronger campaign was demanded from top doctors at the British Medical Association on Monday.

The care.data plan has been very poorly trailed by NHS England, following the government's half-arsed attempt to inform patients throughout the country about how their medical records could soon be shared with other public health services, researchers and even private companies if they failed to opt out of the scheme in time.

But the pamphlets that were sent out to 26.5 million households in England in January were tucked in with junkmail such as pizza menus and gym membership flyers.

It meant that many people who will be directly affected by the changes to how their GP medical records are stored have no clue about the data grab.

The government has largely ignored the concerns expressed by GPs, privacy campaigners and the UK's data watchdog, all of whom have said that the NHS has failed in its duty to properly and clearly inform patients about the database plans.

Instead, ministers have said that they will learn from the mistakes of the care.data pamphlet drop by ensuring that "lessons are learnt to incorporate in future national mailings".

However, Whitehall is finding itself cornered by a range of bodies who are disappointed with its handling of public awareness of care.data.

In response, the government has now admitted that it is investigating reports that some households did not receive the leaflets about the planned data slurp. But Royal Mail has already said it had adequately fulfilled its £1m contract.

BMA GPs' committee chair Chaand Nagpaul said:

With just weeks to go until the uploading of patient data is scheduled to begin, patients remain inadequately informed about these proposals.

Today we call on the government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to uploads taking place.

The BMA said it was planning "urgent discussions" with NHS England to work out ways to better publicise the scheme before the the Health and Social Care Information Centre (HSCIC) shortly begins the arduous task of collecting patient info from GP practices, which will then be linked with hospital data it already stores.

Government-funded mailout is like the botched demolition of Earth planning notice, and we all know how that ended ...

Anecdotally, The Register has heard from a wide of range of readers who are deeply concerned about the care.data scheme.

Reg reader Roger told us:

We’ve definitely not received the leaflet. We do check all the mail receive, we get very little junk mail, and it certainly wasn’t mixed with anything else.

I did ask at our surgery a couple of weeks ago and they seemed unsure what I was talking about. But that’s nothing new.

Others got in touch with El Reg to say that they hadn't received the care.data leaflet because they had opted out of receiving junk mail from Royal Mail. The government has claimed that the postal service was supposed to make an exception with the NHS England flyer by popping it through letterboxes across the country.

Meanwhile, Reg reader Holly pointed out concerns about the relative ease with which GP medical records - classified as being supposedly anonymised or pseudonymised - could be untangled.

"Like most people who have the faintest clue about IT, I've got concerns regarding the release of Amber data, and its subsequent re-identification using a jigsaw attack," she said.

NHS England has claimed it would never publish Amber data, which are classified as such because patient identifiers such as postcode and date of birth are removed first, outside of what it claims are strict criteria.

That's because individuals can be easily re-identified by linking that information to other data sets, the health service has said. Specifically, NHS England has promised:

Did you easily spot the care.data leaflet in among your junk mail?

Amber data are only made available under a legal contract to approved analysts for approved purposes. The contract stipulates how the data must be stored and protected, and how the data must be destroyed afterwards. Any attempt to re-identify an individual is strictly prohibited and there is a range of criminal and civil penalties for any infringements.

Some of you have only heard about care.data after reading about it in these pages.

"Had I not seen your initial article nothing would have registered when the leaflet floated through the letter box with the junk mail," said Reg reader Dennis.

"As it happens I'm part of the cohort under study at www.ukbiobank.ac.uk. For the life of me I cannot see what care.data will achieve that is being achieved completely anonymously by the UK Biobank.

"So thanks for publicising this important issue."

While others simply wanted to know if there was a form they could use to opt out of the care.data scheme. You can find one here.

And Reg reader John couldn't help wittily comparing the entire mailout fiasco to Douglas Adams' best-loved novel.

This leaflet, badly written though it apparently is, is important enough that the mailshot should have been ADDRESSED to each person on the NHS's records, and POSTED, rather than having been sent through the junk mail. As it is, it's the equivalent of the planning notice for the demolition of Earth in the Hitchhiker's Guide to the Galaxy.

Quite. ®