NHS Digital gives patients easier access to who uses their data

A tool that makes it easier for patients to see which organisations can access their data has been launched by NHS Digital.

The Data Uses Register also reveals why such organisations (which could be public sector bodies, charities or commercial organisations) are allowed to use the data and what the expected benefits are.

They must all have a legal basis and legitimate need to use the data, which will only be used for health and care planning and research purposes, NHS Digital said in a statement.

In addition to this, the register also shows the data that NHS Digital 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.

Simon Bolton, NHS Digital’s interim CEO, 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 guardians 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.”

As well as the register, NHS Digital has also published a review of the impact of data released through the Data Access Request Service to create further transparency around how data is used.

The organisation stressed that requests for data undergo stringent reviews, with applicants required to demonstrate that they meet security standards and sign contracts that control how the data they access is used. Those contracts include details of the purpose for which the data may be used, which must be for the benefit of health and social care.

NHS Digital also confirmed that data “will never be sold” with access never granted for:

• insurance or marketing purposes
• promoting or selling products or services
• market research
• advertising

For those who would rather opt out of sharing their data for planning and research purposes they still have the right to do so.

The news follows the implementation date of the GP Data for Planning and Research (GPDPR) programme being scrapped in favour of data collection only starting once certain criteria have been met.

Data will only begin to be uploaded when the following is in place:

• the ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded;
• the backlog of opt-outs has been fully cleared;
• a Trusted Research Environment has been developed and implemented;
• patients have been made more aware of the scheme through a campaign of engagement and communication.