Data bill: actions to take

The Data Protection and Digital Information Bill (2022) has been withdrawn but we believe it may be replaced by legislation that removes even more safeguards for our health data. 

This page still outlines the sort of actions we were proposing to campaign against Bill but it will be updated when it becomes clearer if the Bill is to proceed or if there are proposals for new legislation.

For now, the MPs’ template letter and briefings here are for interim information only.

Download full briefing on the Bill

Download further technical detail about the Bill

You may also want to send your MP information about the context of the Bill – read here

Find out more from KONP Health Data working group

Other campaign materials

  • Leaflet (forthcoming)

What KONP is calling for
• The potential of NHS data should be used for patients and the public good, not for profit
• The stewardship of personal health data should rest with the NHS, supported by proper, state-funded investment that would allow it to develop the relevant technologies and staff training
• There must be transparency of data use – to know who is using our data, on whose say so, and for what purpose. (We support the use of Trusted Research Environments – safe havens for data that users visit to work on data without it being released, and where data use can be properly monitored)
• The independence of the Information Commissioner’s Office should be strengthened, not brought under political control
• The Data Protection Bill must be stopped.