One of the top priorities of both the government and NHS England is digital transformation of the NHS, and health data. Who can access and process health data is core to this.
We fully recognise that health data offer huge potential for improving health and health care for us all. We are however concerned about increasing evidence that, in the interests of economic growth and the pursuit of new trade deals with a strong focus on digital trade, the ‘government-private sector complex’ is pushing for unprecedented access to personal health data.
Already:
- patient data held by the Department of Health and Social Care have been sold or otherwise made accessible to giant pharmaceutical and technology companies
- during the pandemic, emergency powers have allowed the private sector increased access to patient data
- initiatives such as care.data and ‘GPdataGrab’ have attempted to trawl patients’ GP records without their explicit consent and without making it clear that patients had a right to ‘opt out’.
Now there are signs that government is intent on further increasing commercial access and reducing existing safeguards, for instance by weakening legislation such as the Data Protection Act (2018).
The implications of this ‘data grab’ include, but also go beyond, the potential distress or harm that undermining individuals’ privacy may cause. For example, the privatisation of health data will enable interested corporations and governments to instigate an international ‘data race’ to develop ‘AI super-power status’ (UK AI strategy 2021). This 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 new 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
- 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.
- A Data Reform Bill was announced in the Queen’s Speech in May, flagging up plans to reduce data safeguards and ease commercial access. See her Data Reform Bill announced: what can we expect?
- 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 Department of Digital, Culture, Media and Sport has consulted on ‘reforming’ data protection legislation, with a view to increasing to personal data access for the private sector (including health data).
For a summary of KONP’s response see here. - 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
Government consultation/proposals
- Data: A new direction
- Report of Taskforce on Innovation, Growth and Regulatory Reform
- National Data Strategy
- National AI Strategy
Commercial reports
Realising the value of healthcare data: A framework for the future
Useful resources
- 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.