Care.data is crucial, but government incompetence risks undermining the project

Ministers will only receive our backing if they offer three clear safeguards on the use of patients’ data.

A growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and treatments available to patients means that the future success of the NHS will increasingly rely on the data to which it has access. Care.data is designed to link together medical records from general practice with data from hospital activity and eventually extending to cover all care settings inside and outside of hospital.

The improvement of healthcare in England in the future depends upon removing the barriers between primary and secondary care, between the GP surgery and the district general hospital and between social care providers and traditional health care providers. Integration is key to meeting the needs of patients in the future and the availability of integrated data is central to shaping the services that will meet these needs.
 
It’s in this context that the need for care.data should be seen. Labour supports the principle behind it, but not the way this government is going about it. Ministers will only receive our backing if they amend the Care Bill currently passing through Parliament to agree to three clear safeguards.

1. The government should make it easier for concerned patients to opt-out of the proposals, especially online.

2. Data must be genuinely anonymous. They must ensure that any unique identifiers, such as postcodes or NHS numbers, are removed.

3. They must make the Secretary of State accountable for the use of patients’ data.

Mistrust of care.data is not surprising, given the nature of the data involved and the typically haphazard way in which the government has overseen the opt-out programme for patients not wishing to take part.

If you haven’t yet received one, every home in England should have received a leaflet titled "Better information means better Care." Questions to ministers during the recent committee stage of the Care Bill (in which the approval for care.data sits) shows that they don’t yet know if every house has received a leaflet, what the opt-out rate is or what the regional variations in this are.

Incredibly, those who do wish to opt out of the system have to make an appointment with their already over-burdened GPs to do so. They have to take a valuable appointment away from a patient in medical need. Only Jeremy Hunt could pile an unnecessary task upon GPs at a time when primary care is creaking and A&E services across the country take the strain for his repeated policy failures.

That's not all. The chief executives of Mencap, Sense, RNIB, National Autistic Society and Action on Hearing Loss have written to Jeremy Hunt expressing real concerns that information about the care.data scheme is not being communicated in an accessible way to disabled people and that subsequently they are being deprived from making an informed choice about the future of their medical records.

We want care.data to work, it's in everyone's interests that it does. But the government needs to get a grip before the aims of the project are lost on a suspicious public anxious about what care.data is for and how their personal data will be used. Right now, its trademarked incompetence risks compromising this vital project.

Jamie Reed is shadow health minister and MP for Copeland

Health Secretary Jeremy Hunt waits to deliver a speech during his visit with David Cameron to the Evelina London Children's Hospital on July 5 2013. Photograph: Getty Images.

Jamie Reed is Labour MP for Copeland.

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As the strangers approach the bed, I wonder if this could be a moment of great gentleness

I don’t know what to do. In my old T-shirt and M&S pants, I don’t know what to do.

It’s 1.13am on an autumn morning some time towards the end of the 20th century and I’m awake in a vast hotel bed in a small town in the east of England. The mysterious east, with its horizons that seem to stretch further than they should be allowed to stretch by law. I can’t sleep. My asthma is bad and I’m wheezing. The clock I bought for £3 many years earlier ticks my life away with its long, slow music. The street light outside makes the room glow and shimmer.

I can hear footsteps coming down the corridor – some returning drunks, I guess, wrecked on the reef of a night on the town. I gaze at the ceiling, waiting for the footsteps to pass.

They don’t pass. They stop outside my door. I can hear whispering and suppressed laughter. My clock ticks. I hear a key card being presented, then withdrawn. The door opens slowly, creaking like a door on a Radio 4 play might. The whispering susurrates like leaves on a tree.

It’s an odd intrusion, this, as though somebody is clambering into your shirt, taking their time. A hotel room is your space, your personal kingdom. I’ve thrown my socks on the floor and my toothbrush is almost bald in the bathroom even though there’s a new one in my bag because I thought I would be alone in my intimacy.

Two figures enter. A man and a woman make their way towards the bed. In the half-dark, I can recognise the man as the one who checked me in earlier. He says, “It’s all right, there’s nobody in here,” and the woman laughs like he has just told her a joke.

This is a moment. I feel like I’m in a film. It’s not like being burgled because this isn’t my house and I’m sure they don’t mean me any harm. In fact, they mean each other the opposite.

Surely they can hear my clock dripping seconds? Surely they can hear me wheezing?

They approach, closer and closer, towards the bed. The room isn’t huge but it seems to be taking them ages to cross it. I don’t know what to do. In my old T-shirt and M&S pants, I don’t know what to do. I should speak. I should say with authority, “Hey! What do you think you’re doing?” But I don’t.

I could just lie here, as still as a book, and let them get in. It could be a moment of great gentleness, a moment between strangers. I would be like a chubby, wheezing Yorkshire pillow between them. I could be a metaphor for something timeless and unspoken.

They get closer. The woman reaches her hand across the bed and she touches the man’s hand in a gesture of tenderness so fragile that it almost makes me sob.

I sit up and shout, “Bugger off!” and they turn and run, almost knocking my clock from the bedside table. The door crashes shut shakily and the room seems to reverberate.

This article first appeared in the 12 January 2017 issue of the New Statesman, Putin's revenge