NHS Digital improves transparency about how patient data is accessed

NHS Digital launches new Data Uses Strategy

2nd August 2021 about a 2 minute read
"The new Data Uses Register is an important improvement to make our data sharing agreements more transparent and user-friendly." NHS Digital Interim CEO Simon Bolton

A new interactive tool launched by NHS Digital will make it easier to see which organisations access data, the purposes for which they are permitted to use it and the expected benefits.

Although NHS Digital already publishes details of all the data it releases, the new Data Uses Register shows the data it has provided, both as part of the response to the Covid-19 pandemic as well as the many other uses of patient data that support health and social care.

This includes developing insights to design new NHS services for patients, improving the performance, effectiveness or efficiency of existing services, supporting NHS organisations by creating new tools and products to improve care, creating new treatments and supporting the NHS and local authorities in planning services.

The Data Uses Register will provide an interactive report with information about each data sharing agreement (DSA) including:

  • the organisation(s) applying for the data and the data controller(s) responsible for it
  • whether the data controller(s) are sole or joint controllers
  • the purpose for which the data was provided, including commercial purposes
  • information on the datasets included in the agreement
  • the start and end date of the agreement
  • the legal basis under which data is shared
  • whether patient opt-outs were applied to the dataset before release
  • details of physical files that were released and when.

NHS Digital Interim CEO Simon Bolton said:

“The new Data Uses Register is an important improvement to make our data sharing agreements more transparent and user-friendly.

“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 say data will only be shared with organisations for legitimate healthcare planning and research purposes.

Future Care Capital’s CEO Greg Allen recently wrote patients need convincing the new data strategy is safe to prevent them opting out.

FCC has also just published its joint response with the National Care Forum to the government’s draft health and social care data strategy.