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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Our union backed Brexit, but that doesn't mean scrapping freedom of movement

We can only improve the lives of our members, like those planning stike action at McDonalds, through solidarity.

The campaign to defend and extend free movement – highlighted by the launch of the Labour Campaign for Free Movement this month – is being seen in some circles as a back door strategy to re-run the EU referendum. If that was truly the case, then I don't think Unions like mine (the BFAWU) would be involved, especially as we campaigned to leave the EU ourselves.

In stark contrast to the rhetoric used by many sections of the Leave campaign, our argument wasn’t driven by fear and paranoia about migrant workers. A good number of the BFAWU’s membership is made up of workers not just from the EU, but from all corners of the world. They make a positive contribution to the industry that we represent. These people make a far larger and important contribution to our society and our communities than the wealthy Brexiteers, who sought to do nothing other than de-humanise them, cheered along by a rabid, right-wing press. 

Those who are calling for end to freedom of movement fail to realise that it’s people, rather than land and borders that makes the world we live in. Division works only in the interest of those that want to hold power, control, influence and wealth. Unfortunately, despite a rich history in terms of where division leads us, a good chunk of the UK population still falls for it. We believe that those who live and work here or in other countries should have their skills recognised and enjoy the same rights as those born in that country, including the democratic right to vote. 

Workers born outside of the UK contribute more than £328 million to the UK economy every day. Our NHS depends on their labour in order to keep it running; the leisure and hospitality industries depend on them in order to function; the food industry (including farming to a degree) is often propped up by their work.

The real architects of our misery and hardship reside in Westminster. It is they who introduced legislation designed to allow bosses to act with impunity and pay poverty wages. The only way we can really improve our lives is not as some would have you believe, by blaming other poor workers from other countries, it is through standing together in solidarity. By organising and combining that we become stronger as our fabulous members are showing through their decision to ballot for strike action in McDonalds.

Our members in McDonalds are both born in the UK and outside the UK, and where the bosses have separated groups of workers by pitting certain nationalities against each other, the workers organised have stood together and fought to win change for all, even organising themed social events to welcome each other in the face of the bosses ‘attempts to create divisions in the workplace.

Our union has held the long term view that we should have a planned economy with an ability to own and control the means of production. Our members saw the EU as a gravy train, working in the interests of wealthy elites and industrial scale tax avoidance. They felt that leaving the EU would give the UK the best opportunity to renationalise our key industries and begin a programme of manufacturing on a scale that would allow us to be self-sufficient and independent while enjoying solid trading relationships with other countries. Obviously, a key component in terms of facilitating this is continued freedom of movement.

Many of our members come from communities that voted to leave the EU. They are a reflection of real life that the movers and shakers in both the Leave and Remain campaigns took for granted. We weren’t surprised by the outcome of the EU referendum; after decades of politicians heaping blame on the EU for everything from the shape of fruit to personal hardship, what else could we possibly expect? However, we cannot allow migrant labour to remain as a political football to give succour to the prejudices of the uninformed. Given the same rights and freedoms as UK citizens, foreign workers have the ability to ensure that the UK actually makes a success of Brexit, one that benefits the many, rather than the few.

Ian Hodon is President of the Bakers and Allied Food Workers Union and founding signatory of the Labour Campaign for Free Movement.