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.

Already:

  • 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 care.data 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.

Now, the government is 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.

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
NEW

South East London ICS: A report
View or download here

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.

This report looks at the way that one ICS collected and used patients’ data with a view to understanding how best to monitor and, if necessary, challenge what this and other ICSs may be doing. Appendices to the report provide questions and supporting information for campaigners who want to check on their own ICS.

Appendix 1: Explanation on how to use the questions Download

Appendix 2: The questions Download pdf Download Word doc

Government consultation/proposals


Useful resources


Other campaign group