NHS #9: Who gets to see your information?

What this all amounts to is a number of ways in which massively increased amounts of information from your medical record can be accessed by a range of organisations, including private companies.

One stated intention of GPES is to “drive economic growth through the effective use of linked data” [PDF, p6] with which researchers, public bodies and commercial organisations could match records at patient level, based on information they already hold. And NHS England’s chief data officer has revealed plans to reduce the cost of access to the ‘pipeline’ of pseudonymised patient data to just £1!

This on top of the register of customers already approved by the DAAG http://www.hscic.gov.uk/daag, including companies like Dr Foster and BUPA, who may pay a fee for direct access to “sensitive or identifiable” patient data.

Under the new arrangements a whole host of new commissioning-related organisations will be also able to access what is now being called personal confidential data (PCD).

While information from your medical record may initially go to HSCIC or one of the regional Data Management Integration Centres, it doesn’t stop there. As we mentioned before, NHS England has been given a Section 251 exemption to pass identifiable – not just anonymised – data on to its Area Teams, to Clinical Commissioning Groups and Commissioning Support Units. This, despite the conclusion of the Caldicott2 report that anonymised data should generally be sufficient for commissioning.

‘Commissioning’ itself covers a wide range of purposes – e.g. monitoring, surveillance and service planning, targeting treatment, even invoice reconciliation – not only expanding the number of people with access at local, regional and national level but creating a market for analysis and consultancy companies to sell services to the commissioners and their support organisations.

This commodification of your medical records means the default is to make them accessible to more and more people less and less directly related to your medical care, constrained not by the professional duty of confidentiality that most patients presume but by data protection compliance or contract terms and conditions.

And, of course, the merging of health and social care means ever more sharing between healthcare providers, social services and education. Following the abolition of the PCTs, local authority Public Health Teams have now taken on regulated public health functions such as the weighing and measuring of schoolchildren and providing some sexual health services, and may use data to target and drive additional discretionary services such as tobacco cessation, obesity initiatives, etc.

While it makes sense to integrate care delivery around those with particular needs, the direction of travel is towards a culture of universal health surveillance and ‘integrated’ records – whether you choose them or not.

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