A new patient data register will allow NHS service users to see which organisations are accessing their data and for what reason, NHS Digital has said.
The tool provides an interactive report with information about each data sharing agreement (DSA), including the organisation applying for the data, details of physical files released, and the start and end dates of the agreement.
It also clarifies whether patient opt-outs were applied to the dataset before release.
This comes after NHS Digital scrapped its 1 September deadline for its mass data grab last week, in favour of a three-point criteria system.
Multiple delays were made to the General Practice Data for Planning and Research (GPDPR),due in part to its failure to ‘transparently and actively’ communicate that patients had only a few weeks to opt-out.
Highlighting ‘expected benefits’
The new tool will also allow users to see how their data is being used and what the expected outcomes will be.
NHS Digital highlighted the use of patient data in Oxford University’s RECOVERY trial to determine the best treatments for improving Covid-19 outcomes.
It also referred to Barnsley Metropolitan Borough Council, which used patient data to assess health inequalities facing specific social and ethnic groups.
Simon Bolton, interim chief executive of NHS Digital, said: ‘We take our responsibility as the guardian of NHS data very seriously and we are committed to being transparent so that people can see exactly who their data has been shared with and why.
‘It is important that the public can see openly and clearly how NHS data is shared to build confidence and trust and this new tool will help to ensure that.’
NHS Digital also clarified that data will ‘never be sold and access will never be granted’ for insurance, market research, advertising or selling products and services.
The organisation’s initial GPDPR scheme had previously fallen under fire from campaigners suggesting it would make sensitive patient data available to private firms.
