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 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
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
- NEW 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.
- 5 reasons why our personal data is under threat – a clear introduction to the topic
- 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
- The Health and Care Bill is vague on detail but raises new concerns for patient privacy and the sharing of our personal health data with private companies. See The Health and Care Bill and the NHS data grab
- Digital trade is now of huge importance in trade deals, and trading rules are being influenced by multinational technology corporations that are especially keen to gain access to NHS data. See Big Tech and digital trade
- The government wants 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.
- Government proposals for new legislation and deregulation will have implications for ICSs. See The Integrated Care System as a key site for private companies’ access to patient data.
See also http://labournet.net/other/2201/data1.html
- The Government is looking to introduce ‘modern regulation’ to govern technologies of the Fourth Industrial Revolution, such as AI. ‘Modern regulation’ will mean weaker statutory control of these technologies and a reduced regulatory burden for the private sector. See The NHS, governance and the Fourth Industrial Revolution technologies
- Data: A new direction
- Report of Taskforce on Innovation, Growth and Regulatory Reform
- National Data Strategy
- National AI Strategy
- The field of digital and data is changing rapidly, with new technologies and terminologies constantly emerging. We aim to keep this guide to the most commonly used terms under regular review, along with information about the various organisations dealing with data protection, standards, ethics etc.
See Digital and data: Terminology and relevant bodies
- This Institute for Innovation and the Public Person webinar is broadly about AI development as relevant to the UN’s goals, including those for health. It discusses the benefits, but also the downsides of these AI technologies and how these might be avoided.
See AI for Good: Platforms, ethics and public value
- Amberhawk A monthly blog on data protection issues and training
- Evidence from Rosa Curling of Foxglove at People’s Covid Inquiry Sunmmary and Evidence, Session 7 Profiteering from the people’s health? Witness 3
- This unsettling video by the Financial Times shows how Covid 19 exposed the tension between the need for data to ‘track and trace’ and the right to privacy and justice.