Health Data Working Group

What is happening to our data?

Our health care records are a uniquely rich source of data that could be used for the public good. However our data are seen by the Government as the means for economic growth and should therefore be made available to Business.


  • patients’ data held by the Department of Health and Social Care have been sold or otherwise made accessible to giant pharmaceutical and technology companies.
  • emergency powers that were introduced during the pandemic and gave multinational corporations like Palantir increased access to patient data have since been extended.
  • initiatives such as and ‘GPdataGrab’ have attempted to trawl patients’ GP records and extract data without explicit consent and without making it clear that patients had a right to ‘opt out’.
  • patient’s data, sometimes in identifiable form, are relied on by ICSs for population health management together with the redesigning and cutting of health and care services while embedding tech companies within the infrastructure of the NHS.

◼︎ The government is now intent on further increasing commercial access and reducing existing data safeguards by reintroducing the Data Protection and Digital Information Bill (No 2).

◼︎ Measures in the Bill represent an abuse of democracy by giving ministers powers to regulate without Parliamentary scrutiny; an abuse of human rights by forcing organisations to share data they hold on you with the State and law enforcement authorities, and an abuse of our rights as citizens by, e.g., making it more difficult to know what data an organisation holds on you.

◼︎ In addition, the Bill will hugely undermine the privacy of our personal health data

◼︎ See here for more information about the Bill, and visit  here to see what actions to take to resist it.


◼︎ The government wants to trade our data with private companies, claiming this will help them to create new knowledge and products, and so boost economic growth.

◼︎ In response, NHS England will pressurise underfunded NHS organisations (e.g. GP practices and Trusts) to agree deals with third parties (including private companies) allowing them access to our health data without our awareness or consent, and in return for dubious ‘rewards’.

◼︎ Most people are against the use of their personal data for commercial purposes. This scheme could lead to loss of public trust, and more people opting out of allowing their data to be used for research, with serious consequences for the NHS data store and the public interest.

◼︎ See here for further information and action to take to resist

This ‘data grab’ has implications that include, but also go beyond, the loss of patients’ trust and the potential distress or harm that undermining individuals’ privacy may cause. For example, the privatisation of health data will encourage interested corporations and governments to enter an international ‘data race’ to develop ‘AI super-power status’. This development would be at the expense of any plans for a global ‘data solidarity’ that would promote the use of data for public good.

All this means that the appropriation of our data should be resisted as actively as the privatisation of our NHS.

The KONP Data Working Group
The KONP Data Working Group aims to provide analysis and a range of materials to support campaigning against the privatisation of personal health data, and to highlight the non-exploitative alternatives that exist.

As we become more established we will add details of how to become involved in campaigning against the privatisation of our personal data along with a range of campaign materials.

KONP analysis to date

This webinar gives an update on the governments’ intentions to make our health data accessible to the private sector


The collection, analysis and sharing of patients’ data have become essential for the work of Integrated Care Systems (ICS) but also raise questions about patient confidentiality.

The Data Working Group has developed a series of questions to put to ICSs as Freedom of Information requests in order to understand how ICSs are treating our data, and to challenge this if necessary.

If you want to use/adapt these questions for your own ICS, you can see them here and there are suggestions of how to use them here.

Short reports on the results of using these questions
Example 1 A case study of South East London ICB
▪︎ Example 2 Opaque and questionable use of data by North East London ICB

More detailed versions of these reports can be found here
(South London detail)
(NE London detail)

Want to see the doctor: Prepare to cough up your data first. This article describes how GPs are now using third-party software for appointments, triaging etc, and tha, consequently, many patients can only be seen if they hand over their personal data to private companies

  • NEW What threats does ‘Big Tech’ pose for our personal health data:
    A brief article outlining how it’s not just our data privacy that is at risk when Big Tech gain access to NHS data. In addition, these corporations are increasingly taking ownership of the knowledge generated from the data, allowing them to gain unsanctioned control over future healthcare developments. Read here
  • Labour’s Industrial Strategy and Harnessing Data for Public Good
    There is a single mention of data protection in Labour’s Industrial Strategy which states that “a Labour government will stand up for the democratic, privacy and security rights of UK citizens”.
    Read here about our concerns relating to data in the broader context of Labour’s plans.
  • England/NHS Digital is to run a pilot test to collect and share identifiable patient data from acute providers on a daily basis. The pilot (said to breach data protection law) will use Palantir’s Foundry platform, increasing the chances that Palantir will win the huge contract for a national Federated Data Platform. The article looks at the implications of this pilot and what it foreshadows.NHS England ignores data protection law to test Palantir’s Foundry Platform and strengthen central control 
  • For information about the Government’s recently announced strategy on data use and our alternative proposals, see Data saves lives: reshaping health and social care with data.

Government consultation/proposals

Useful resources

Other campaign group