Opting out of care.data is not the answer

Mistrust of care.data is not surprising, given the corporate interests involved - but simply opting out will make it even harder to monitor the impact of privatisation on Britain's health.

Alison Macfarlane Allyson Pollock
31 January 2014

NHS England has sent a leaflet ‘Better information means better care’, sent to every household in England. This has triggered a campaign to encourage people to opt out of the new care.data system by telling their GP that they do not want their health records uploaded to it.

Opting out will undermine both the new system and our existing national statistics as well playing into the hands of the private sector. It means data will be inadequate to assess the impact of government policies to privatise the NHS. 

The aim of care.data is to link together coded records from general practice with data from other national data systems, starting with linkage to existing ‘Hospital Episode Statistics’. The plans are to provide “linked data, that will eventually cover all care settings, both in and outside of hospital.” This is explained by the Health and Social Care Information Centre at and NHS England.

Care.data should not be confused with Summary Care Records, which enable clinical information to be shared between individual patients and the professionals who provide care to them. There are no plans to upload these records into care.data.

Although England has had NHS hospital data analysed at a national level for a long time, this has not been the case with data from general practice, where most care takes place. England is well behind Scotland and Wales both in data linkage and in engaging with the public about it.

To address this, the GP Extraction Service was set up in 2011 with a budget of £40 million to extract data from general practice systems and analyse them at a national level for England. 

If this and the further data linkage work, it would provide valuable population-based statistical information for commissioners, public health and for researchers. It would allow us to monitor inequalities in access and unmet need and changes in rates of heart disease and cancer, for example.

The care.data system will cost over £50million. It is unclear from the information on its web site whether this includes any routine analyses to be done in-house and made publicly available as national statistics.

Meanwhile cuts of £9million to the Office for National Statistics include cuts of £1million in its statistical outputs which will lead to the loss of a range of highly regarded health statistics. There is also an uncertain future for the decennial Census, which dates back to 1801 in England and Wales and is essential for public health as it provides data on the whole population.

There are justifiable concerns that the government is preparing the way for the commercial exploitation and use of our NHS data and that the private sector will have priority in accessing the data for analysis.

The person in charge of care.data, in his role as National Director for Patients and Information at NHS England, is former Sunday Times journalist Tim Kelsey. Kelsey is also the founder of Dr Foster, a company which has been the subject of a critical parliamentary Public Accounts Committee enquiry. Dr Foster analyses NHS patient data then sells back the analyses to the NHS organisations which collect the data.

Roger Taylor, co-founder of Dr Foster, has been appointed to a senior role in the Care Quality Commission. Kingsley Manning has been appointed Chair of the Health and Social Care Information Centre. Manning’s former roles were as head of health at outsourcing firm Tribal, and before that founder and managing director of health and information consultancy firm Newchurch, which provided advice on PFI and sell off of NHS assets.

These corporate appointments are akin to putting bankers in charge of NHS hospitals. 

To make matters worse, Clinical Commissioning Groups do not analyse data in-house to inform their decisions. Since the Health and Social Care Act came into force, vital information functions have been outsourced to Commissioning Support Units, organisations which have no basis in law and are temporarily hosted by NHS England. Plans to float these organisations on the stock market have been suspended in favour of turning them into social enterprises, staff mutuals, customer controlled social enterprises or joint ventures. Clinical Commissioning Groups should demand that these information functions and the associated NHS funds and staff be returned to them before any privatisation takes place.

Campaigners are concerned that pharmaceutical industry and health insurance companies will be simply ‘given’ the data.

Section 251 of the NHS Act 2006 requires them to state what uses will be made of data and how they will be stored securely. They will also have to answer similar questions from the Health and Social Care Information Centre’s Data Access Advisory Group. Applicants do not ‘own’ the data but can use them. This still raises serious questions about the purposes to which the data will be used and the extent to which analyses may be sold on. There is still no clarity or transparency about the ownership and control of the data, how the data will be accessed and used by the private sector or how statistics about NHS-funded private care will be made available to all.

We need reassurance from government that the data will be used to produce and publish national statistics in line with the National Statistics Code of Practice. The Code, overseen by the UK Statistics Authority, is designed to be observed by all the public bodies that produce official statistics. It is trustworthy and trusted, and considered to be central to maintaining a unified statistical service that meets the needs of government and society.

As the government is privatising health care, it is crucial to have complete and high quality data to monitor the impact of these policies. The private sector has a poor track record for data collection. The atrocious quality of private sector data returns made it impossible to monitor contract compliance for independent sector treatment centres, the government’s £4 billion programme for elective surgery, where NHS funds were diverted to for-profit providers. General practices owned by private companies such as Virgin and Serco will be protected from scrutiny if their patients opt out, as there will be no data about them. This gap already exists in private nursing and residential care homes.

Instead we need a public campaign to promote public data and oppose privatisation of both our healthcare services and data functions.

Patients and the public need to make it clear to NHS England that their consent for medical records to be uploaded to care.data is conditional on it not being used for commercial purposes or handed over to third parties such as drug companies and health insurance and health care corporations.

Such a campaign must make links between opposing the privatisation of the data collection and analysis systems and opposing the privatisation of our health services. We must ensure that NHS England and Clinical Commissioning Groups oppose both. 



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