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