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NHS Digital launches data transparency tool as millions opt out of record sharing

NHS Digital launches data transparency tool as millions opt out of record sharing

Patients in England can now see which organisations have accessed their NHS data and for what purpose. 

NHS Digital’s new Data Uses Register service intends to increase transparency around how patients’ data is used by third parties.

It comes as the Government was forced to delay the General Practice Data for Planning and Research (GPDPR) scheme again last week after a backlash over patient data safety.

Meanwhile, figures show NHS Digital has recorded over three million national data opt-outs since 1 July 2021, from patients who do not want their confidential information to be used for anything other than their individual care.

People can already see what data the NHS releases, but the new interactive tool allows people to see more clearly which institutions utilise the data, why they are allowed to access it and the anticipated benefits.

Organisations making use of the data include public sector bodies, charities or commercial organisations, who all legally have access for health and care-related planning and research.

Previous uses of the data include enhancing existing NHS patient services, creating new ones and assisting NHS organisations innovate new resources to offer better care.

The data can also help shape new treatments and aid NHS and local authorities with planning services.

For example, patient data was critical to determine which medications, including dexamethasone, were most successful for Covid patient outcomes in the University of Oxford’s Recovery trial. The drug went on to save more than a million lives worldwide.

NHS Digital’s interim chief executive Simon Bolton said the new Data Uses Register is ‘an important improvement to make our data sharing agreements more transparent and user-friendly’.