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 shadow health minister and MP for Copeland

David Cameron addresses pupils at an assembly during a visit to Corby Technical School on September 2, 2015. Photograph: Getty Images.
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Can Cameron maintain his refugee stance as he comes under attack from all sides?

Tory MPs, the Sun, Labour and a growing section of the public are calling on the PM to end his refusal to take "more and more". 

The disparity between the traumatic images of drowned Syrian children and David Cameron's compassionless response ("I don't think there is an answer that can be achieved simply by taking more and more refugees") has triggered a political backlash. A petition calling for greater action (the UK has to date accepted around 5,000) has passed the 100,000 threshold required for the government to consider a debate after tens of thousands signed this morning. Scottish Conservative leader Ruth Davidson has tweeted: "This is not an immigration issue, it's a humanitarian one, and the human response must be to help. If we don't, what does that make us?" Tory MPs such as Nicola Blackwood, David Burrowes, Jeremy Lefroy and Johnny Mercer have similarly appealed to Cameron to reverse his stance.

Today's Sun declares that the UK has "a proud record of taking in desperate people and we should not flinch from it now if it is beyond doubt that they have fled for their lives." Meanwhile, the Washington Post has published a derisive piece headlined "Britain takes in so few refugees from Syria they would fit on a subway train". Labour has called on Cameron to convene a meeting of Cobra to discuss the crisis and to request an emergency EU summit. Yvette Cooper, who led the way with a speech on Monday outlining how the UK could accept 10,000 refugees, is organising a meeting of councils, charities and faith groups to discuss Britain's response. Public opinion, which can turn remarkably quickly in response to harrowing images, is likely to have grown more sympathetic to the Syrians' plight. Indeed, a survey in March found that those who supported accepting refugees fleeing persecution outnumbered opponents by 47-24 per cent. 

The political question is whether this cumulative pressure will force Cameron to change his stance. He may not agree to match Cooper's demand of 10,000 (though Germany is poised to accept 800,000) but an increasing number at Westminster believe that he cannot remain impassive. Surely Cameron, who will not stand for election again, will not want this stain on his premiership? The UK's obstinacy is further antagonising Angela Merkel on whom his hopes of a successful EU renegotiation rest. If nothing else, Cameron should remember one of the laws of politics: the earlier a climbdown, the less painful it is. 

George Eaton is political editor of the New Statesman.