Two months to opt out: row erupts over NHS ‘data grab’ of Britain’s GP records

Health Secretary Matt Hancock hails benefits of health database but privacy groups are concerned

UK Health Secretary Matt Hancock has hailed the National Health Service for pioneering the study of dexamethasone as a Covid-19 treatment. Getty

Millions of people in Britain have two months to opt out of a controversial plan to collect patient data from doctors to create a new national system.

Under the proposal, patient information from GP surgeries across England would be added to a National Health Service database from September 1.

The data would include information about gender, ethnicity, sexual orientation, diagnoses and medication, as well as information about a patient’s physical and mental health.

The information – from medical records created up to 10 years ago – would not include a patient’s name or address.

On Tuesday, Britain’s Department of Health launched its Data Saves Lives campaign, designed to promote the benefits of the central database.

The department said the new system would give health and care staff increased access to up-to-date medical information.

It said improving data collection would provide staff with a greater understanding of the health situation across the country.

However, privacy groups are concerned the data could be misused amid fears that the system has not been explained properly to patients.

Cori Crider, founder of Foxglove, a group that campaigns to stop abuse of digital technology, said GP data was "possibly the most valuable" set of health information in the world.

She said she was concerned that information could be accessed by private companies.

"When it comes to GP data, the government's whole approach with 55 million people's cradle-to-grave health records was and still is to collect it all first and ask questions later," she told the BBC's Radio 4 Today programme.

Advocacy group MedConfidential described the plan as a “data grab” and raised concerns that it might deter some patients from telling their doctors about medical issues if they believed that information was to be sold to private companies.

"The biggest single issue is trust and unless the government gets this right they are going to collapse trust again,” the group’s spokesman Phil Booth said.

Health Secretary Matt Hancock said “consent should be at the heart” of the government’s plan and people could opt out through the NHS Digital website if they wanted to.

The government initially said people could opt out of the scheme by June 23 but the deadline was delayed until September 1.

In highlighting the benefits of sharing data, Mr Hancock said information obtained during the pandemic meant dexamethasone was identified as an effective treatment for Covid-19, preparing the way for the steroid to become widely available on coronavirus wards.

Dexamethasone – already prescribed for many conditions for its anti-inflammatory effects – was shown to reduce deaths by a third for Covid-19 patients on ventilators.

UK officials revealed in March that one million lives had been saved globally by dexamethasone treatment.

“Because of NHS data and how we followed people who had Covid, we discovered that dexamethasone helped save lives for people in hospital,” he said.

“A million lives have been saved around the world because of that discovery. A million people are alive today who would have died were it not for that high-quality use of data in the NHS.”

The drug, ingested as a liquid or tablet, is now recommended by the World Health Organisation as a treatment for seriously ill Covid-19 patients.

The British government said better use of personal data would help it analyse key trends in the health of the nation and improve commissioning and planning of services.

Such improvements would allow better preparation to identify, prepare for and respond to future diseases, it said.

Mr Hancock said the pandemic showed people were more likely to share their data when there was an overriding public health benefit.