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. But 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. England is well behind Scotland and Wales both in data linkage and in engaging with the public about it.
If 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.
There are, however, 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
Campaigners are concerned that while pharmaceutical industry and health insurance companies do not get ownership of the data 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.
As the government is privatising health care, it is crucial to have complete and high quality data to monitor the impact of these policies. 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.