The Labour government has introduced draft legislation – the Data (Use and Access) Bill – that is expected to move quickly through Parliament. One of its main intentions is to ‘harness the power of data’ to encourage innovation and economic growth. The Bill includes a number of worrying provisions that aim, for example, to:
- reduce data protections and increase access to our personal health data for the private sector and public authorities;
- redefine ‘scientific research’ to include commercial activities;
- change the meaning of ‘consent’ so that agreeing to the use of your data for one research project means also consenting to future but yet unknown projects;
- expand the lawful basis for the use of solely automated decision making without consent;
- weaken our right to question organisations about the data they may hold about us;
- give significant new powers to a Secretary of State allowing them to introduce or change legislation with little to no Parliamentary scrutiny.
In effect, the Bill is a gift to the private sector at the expense of our rights and privacy.
WHAT YOU CAN DO
Please write to your MP and ask them to vote against the Bill unless it is amended to address widespread concern.
We provide a Briefing for MPs and a template covering letter below.
Briefing for MPs
Labour’s Data Use and Access Bill and the use of NHS data
Keep Our NHS Public Briefing, December 2024
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Overview
The Data (Use and Access) Bill (DUA), introduced in the House of Lords in October 2024 and aiming to “harness the power of data”, is central to the Government’s strategy for economic growth. It retains many of the provisions of the previous Data Protection and Digital Information Bill (DPDI) that fell before the general election, which means that much of the new Bill’s content has already been discussed. Because of this (and due to the consequences of starting its journey in the Lords) the Bill is expected to progress rapidly through Parliament with little scrutiny, even though it contains new provisions that will lower important data protections.
The DUA includes proposals about data sharing, digital ID, Smart Data, digitising key public registers and assets, as well as amending data protection laws. Although the Bill raises many concerns, this briefing focuses on its implications for the NHS, its patients and their personal health data.
If unamended, the Bill is likely to undermine the public’s trust in the way their personal health data is used. The Bill also weakens the role of Parliament: a large number of its proposals contain little detail but instead give considerable power to the Secretary of State (SoS) to create new provisions via Statutory Instrument.
To read in full
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Template covering letter to MPs
View covering letter to MPs – pdf
Download covering letter to MPs – Word doc