NHS Digital releases new Data Uses Register

NHS Digital has announced plans to improve transparency around how patient data is utilised and accessed, via a new Data Uses Register.

According to the organisation, the ‘new interactive tool’ will make it easier to see who is viewing the data, what they are allowed to use it for and the potential benefits from doing so.

NHS Digital says that the register provides an ‘interactive report’, including information about each data sharing agreement (DSA). Some of the areas covered include: who is applying for the data and the data controllers responsible for it, as well as whether they are sole or joint controllers; the purpose for providing the data, including commercial reasons; which datasets are included in an agreement, as well as the start and end date of the agreement; whether patient opt-outs were applied before release; and details around the release of physical files.

Those using the data – such as public sector bodies, charities and commercial organisations – must have a legal basis for doing so and a ‘legitimate need’. While NHS Digital adds that data will “only be used for health and care planning and research purposes” and will never be sold, with access refused for organisations planning to use data for insurance, marketing or market research purposes, promoting or selling products and services, or for advertising.

Simon Bolton, NHS Digital Interim CEO, commented: “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.”

The register shows the data that NHS Digital has provided as part of the COVID-19 pandemic response, as well as for other health-related uses such as developing insights for the design of new NHS services, improving existing services, creating new tools, products and treatments to improve care, and supporting planning services.

Examples cited by NHS Digital include: using patient data for the University of Oxford’s RECOVERY trial to identify coronavirus treatments, including dexamethasone, which reduced deaths by one-third; improving cancer services, including IQVIA and The Christie NHS Foundation Trust using ‘de-identified hospital admissions data linked to national cancer data’ to ‘understand variations in the access to care’; reducing inequity in healthcare, such as through Barnsley Metropolitan Borough Council’s project using data to conduct analyses of health status, inequalities and outcomes for specific social and ethnic groups.

To view the new NHS Digital Data Uses Register, with information for both applicant organisations and data controllers, click here.

In related news, NHS Digital has also recently announced new plans for the GP Data for Planning and Research programme, with patient data now no longer set to be collected from 1 September unless three tests have been met, amid changes that are intended to increase security, privacy and choice for patients.

Meanwhile, the UK Government and NHSX have also opened up a new opportunity to suppliers to help develop a Health and Social Care Standards Register.