Personal data including health data held in NHS systems has been passed through many systems ever since computers were used to store, process, transfer and share with other systems. Each time data is stored, processed, transferred and shared, additional computing applications will be used to identify the data and ensure it goes into the application and system for which it was intended – based on instructions (algorithms) when it is first ‘packaged’ for sending, storing, processing, transferring or sharing.
The NHS programme for IT (NHSPfIT) introduced a range of systems from possibly entirely US technology companies which would be accessed by users of mostly Microsoft operating systems and Microsoft office applications. So each time a piece of data is added, stored, processed, transferred, shared, this data is stored and identified on US servers and databases which Europe has sensibly identified and continuously introduced improvements to data protection legislation such as GDPR.
These types of data are organised by algorithms and built into personal demographic health profiles, also by algorithms – for health insurance purposes. This has been expanded further to include mobile and wearable devices which also store, process, transfer and share data.
“The market drive of consumerism must pave the information infrastructure for healthcare applications”1
So for a patient these are health information records that include:
- personal demographic identifying data
- personal data relating to health conditions and treatment in possibly more than one healthcare facility or unit
- personal data relating to family / guardians
- personal data relating to location of facilities and treatment
Since the breakup of the NHS in 2012, for NHS organisations – health information records are organised to identify not just individual patients but find patterns and groups of anything ranging from secondary care treatment, primary care treatment, community and tertiary care treatment as well as information about the providers and financial data.
Simon Stevens returned from UnitedHealth to become CEO at NHS England. Since then the United Health subsidiary – Optum joined the NHS England lead provider framework agreement for commissioning and recently gained the first commissioning contract in Lincolnshire worth over £9 million.Tim Kelsey who co-founded Dr Foster and the consultancy that won part of a £12 million contract in the NHS without a tender for the development of NHS Choices, became Director for Patients and Information for NHS England.
In spite of Dr Foster losing the NHS Choices contract to Capita in 2008, they continued to gain including part of the Yorkshire and Humber Commissioning Support Unit £18 million contract. Matthew Swindells who advised David Nicholson, former CEO of NHSEngland on NHSPfIT and health informatics before joining Cerner, has replaced Tim Kelsey . Cerner continue to gain NHS contracts outside of the NHSPfIT Cerner Millenium implementations. All of these companies have access to health information records that are stored, processed, transferred and shared through their systems as well as NHS infrastructure which again is often delivered by US companies.
Whilst NHS service users had an idea or expectation of what was happening to their personal data and where this has now changed with multiple US technology companies, supported by the UK tech sectors who in some cases legally but in most cases illegally access personal and personal health data which has been provided to them by corrupt managers and facilitated by corrupt political actors.
To name a few shocking examples:
- HSCIC sharing personal health data via the Care Data scheme with healthcare insurers and other third parties.
- Google stealing the entire Hospital Episodes data from every single NHS hospital, facilitated by their partners in crime PA consulting (who worked in the same building as them at the time)
- Google winning access to the entire NIHR clinical research network data on a contract, via their partners in crime PA consulting (who worked in the same building as them at the time)
- Google stealing data about patients from the Royal Free Hospital via their Deep Mind scheme
And with nearly every single bit of NHS data being accessed via Microsoft operating systems and Microsoft applications since the beginning of time, Microsoft have been ever busy developing new health applications to harvest even more.
Maybe NHS for sale is not the correct term here seeing as it hasn’t been sold just gifted without people’s consent. However the reality is that whatever information about patients and healthcare is added, stored, processed, transferred, shared within the NHS, is also concurrently being recorded by technology companies for profit. And the regulation in the UK is still almost non-existent. But hopefully this will be changed in the future and the 21st century mimics of middle age snake-oil salesmen will finally be held to account.
NHSdatasharing info website created and maintained by Dr Neil Bhatia is a great resource
Other useful organisations not mentioned previously:
NHS for Sale: https://www.nhsforsale.info/
NHS Reinstatement Bill: http://www.nhsbillnow.org/
Conditions generated by the Conservative government caused them to be replaced in the 1940s by the Labour party. The welfare state was highlighted by a report by Sir William Beveridge who saw how the welfare state and NHS implementation could address the five ‘giant evils’ of squalor, ignorance, idleness, want and disease. With Sir Clement Atlee and Aneurin Bevan, the NHS appeared in 1948. We do not seem to be better off with underfunding and shrinking of both welfare provision and a National Health Service. Epidemiology has been helpful for healthcare but use of data for insurance purposes to profit billionaire CEOs and other billionaire shareholders has no place. Universal healthcare is increasing elsewhere and we can reinstate in the UK as well in spite of political turbulence.
I do not believe that nothing should be traded and everything should be socialised, I am not a socialist or any idealist but some areas such as healthcare and education produce a more intelligent, healthy population that can improve the world around them.
1. Dick R, Steen EB, Detmer DE (1991,7) p4 ‘The Computer-Based Patient Record: An Essential Technology for Health Care, Revised Edition’, National Academies Press, available at http://www.nap.edu/catalog/5306.html