HOW OUR DATA IS BEING USED
Analysis by the Data Working Group
- What is happening to our NHS data: (Video above) This webinar, recorded during the passage of the Health and Care Bill covers how the NHS and its Integrated Care Systems (ICSs) have become dependant on patient data (not least for cost control and rationing); how the government intends to make our health data accessible to the private sector; and gives an alternative vision for how data might be used for the public good.
- NHS England ignores data protection law to test Palantir’s Foundry Platform and strengthen central control. This article follows the enactment of the Health and Care Bill in 2023, and looks at the implications of the pilot that Palantir undertook on behalf of NHSE and what it foreshadowed.
- In 2022, supported by the introduction of the Health and Care Bill, the then government planned to establish the UK as world leader in technology and ‘a science superpower’ by bringing together NHS data and “the power of our capital markets. For more details see “No ‘opt out’”: How access to personal data is increasing in the thirst for economic growth.
- The Integrated Care System as a key site for private companies’ access to patient data calls for stronger regulation and data protections in the face of proposals within the Health and Care Bill (enacted in 2023)
- The Goldacre Review has recommended Trusted Research Environments (TREs) as a way to increase data privacy while increasing efficiency and access (including for the commercial sector). The Government seems in favour of TREs but their stance is contradictory. See The Goldacre Review, Trusted Research Environments, and NHS data.
ANALYSIS OF LOCAL INTEGRATED CARE SYSTEMS’ USE OF DATA
Following the enactment of the 2022 Bill, and given the new use of our data by Integrated Care Systems (ICS), the Data Working Group developed a series of questions to put to ICSs as Freedom of Information requests in order to understand how our data is being treated, and to challenge this if necessary. See short reports on the results of using these questions:
Example 1: A case study of South East London ICB
Example 2: A case study of North East London ICB
If you want to use/adapt our questions for your own ICS, you can see them here, and there are suggestions of how to use them here.