Why the public should opt in to care.data and out of data privatisation

The NHS England leaflet ‘Better information means better care’, sent to every household in England, 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, while playing into the hands of the private sector, as 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 the 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 and NHS England. England is well behind Scotland and Wales both in data linkage and in engaging with the public about it.

Care.data should not be confused with Summary Care Records , the purpose of which is to share clinical information 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. Because of this, the GP Extraction Service was set up in 2011 with a budget of £40m to extract data from general practice systems and analyse them at a national level for England. If this and the further data linkage works, it would provide valuable population-based statistical information for commissioners and public health officials, and for researchers allowing us to, for example, monitor inequalities in access and unmet need and changes in rates of heart disease and cancer.

The care.data system will cost over £50m and its web site gives no indications of any routine analyses to be done in-house. Meanwhile cuts of £9m to the Office for National Statistics include cuts of £1m in its statistical outputs, which will lead to the loss of a range of highly regarded health statistics. The future of 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, is also uncertain.

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, founder of Dr Foster, which was the subject of a critical parliamentary Public Accounts Committee enquiry. Dr Foster analyses NHS patient data and then sells back the analyses to the NHS organisations that collect the data. Roger Taylor, co-founder of Dr Foster, has been appointed to a senior role in the Care Quality Commission, and Kingsley Manning has been appointed Chair of the Health and Social Care Information Centre. He was founder and managing director of health and information consultancy firm Newchurch, which provided advice on PFI and sell off of NHS assets, and former head of health at Tribal (now part of Capita). 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 that have no basis in law and that 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, although 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. While applicants do not get ownership of the data they are able to use them and this 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 considered to be central to maintaining a unified statistical service that meets the needs of government and society and is both trustworthy and trusted.

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 £4bn 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 –  as is already the case in nursing and residential care homes.

Instead a public campaign is needed to promote public data and oppose privatisation of both our healthcare services and data functions. Patients and the public need to make 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, and must ensure that NHS England and Care Commissioning Groups oppose both.

Prof Alison Macfarlane
Professor of Perinatal Health
City University London
44 (0)20 7040 5832

Prof Allyson Pollock
Professor of Public Health Research and Policy
Queen Mary University of London
44 (0)20 7882 5637