NHS data strategy: Patients will get more control over data – Hancock

Patients in England will get “greater control” over their health and care data under new proposals, Health Secretary Matt Hancock has said.

People will be able to access their medical records from different parts of the health system through various apps.

However critics are worried that data could be misused and the plan has not been properly explained.

Mr Hancock has defended the strategy, saying it would improve care and make data more secure.

It follows the announcement of a two month delay to plans to create a central digital database from GP records in England, amid concerns that patients needed more time to understand the system.

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The new strategy, called Data Saves Lives, will break down data barriers and give patients confidence that health and care staff have up-to-date information enabling them to make quicker, more informed decisions.

It added that improving data collection would mean staff spent less time looking for information and more time treating patients.

“The goal here and what I am determined to do, is to have trusted
research environments which protect people’s privacy whilst also allowing
for us to get insights out of the data which saves lives.”

Patients will be able to manage appointments, refill medications and speak with health staff when needed via apps.

Mr Hancock said “data saves lives” and that more effective use of that data would deliver better care for patients.

“The pandemic has taught us we must be bold and the great strides we have made on vaccines and treatments during this time have been made possible by the way we use data,” he said.

Mr Hancock said the use of dexamethasone to treat Covid had been discovered thanks to the use of data within the NHS and had gone on to save “over a million lives” around the world.

“The goal here and what I am determined to do, is to have trusted research environments which protect people’s privacy whilst also allowing for us to get insights out of the data which saves lives,” he told BBC Radio 4’s Today programme.

NHSX chief executive Matthew Gould said patients needed to “own their data”, have access to it and have confidence on how the NHS was handling it on their behalf.

The strategy proposes a new duty to share anonymous data safely and appropriately across the entire health system and new legislation is due to be introduced to require all adults social care providers to provide information about all the services they fund to ensure users have the best care.

The proposals include better use of personal data to analyse trends in the health of the nation, which the Department of Health and Social Care (DHSC) said could help improve commissioning and planning of services.

The DHSC said that the NHS was committed to using data lawfully and holding it securely.

A central digital database was due to be introduced, under the General Practice Data for Planning and Research (GPDPR) programme, on 1 July but has now been pushed back until September, with the NHS and other medical bodies expressing concerns that patients need more time to learn about the system.

Cori Crider, co-founder of Foxglove, which campaigns to stop abuse of digital technology, said the government took a “collect it all first and ask questions later” approach when it came to GP data and said the strategy included potential commercial uses of information.

She told the Today programme that GP data was “possibly the most valuable” set of health information in the world and called for the DHSC to send a consent form to individuals offering them the chance to opt out.

Ms Crider said that, while there were some positives in the strategy, people should be offered the option to opt out of specific uses of their data while allowing others.

Mr Hancock said he thought consent should be at the heart of the strategy and believed the vast majority of people would be willing to share their data if there was a “strong mission and purpose” behind the use of data.

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