Thursday, 17 Jun 2021

NHS data opt-out: Can you still opt-out if you miss the deadline?

NHS Digital outlines how patient data is used

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The NHS is updating the way it stores and gathers patient data. NHS Digital will be moving health records onto one massive centralised database which can be accessed by third parties, in a change which will affect 55 million NHS patients across England. With the deadline to opt-out of the scheme fast approaching, how can you stop your records from being shared?

As part of the plan, information on mental and sexual health, criminal records, abuse and drugs use will to transferred to a new database.

NHS Digital insists all records on the new database will be anonymised and safely protected by encryption security systems.

Data will start to be collected from GP practices from July.

You can opt-out of the data-sharing initiative but the deadline to tell your GP is June 23 of this year.

How can I opt-out?

If you do not want your data to be shared with NHS Digital you must register to opt-out of the data collection.

There are two ways of doing this – the National Data Opt-out or the Type 1 Opt-out.

Type 1 opt must be done through the GP practice that you are registered with, and means your data will not be shared with other NHS services.

The National Data Opt-out means your GP will share your data with other NHS services, but the information will not be shared beyond this.

There is no deadline for the National opt-out, but if you wish to carry out a Type 1 Opt-out, you must do so by June 23.

To do this you must fill out a form to request that you don’t want your confidential patient information, held by your GP practice, to be used for any other purpose than your own care.

More information on how to opt-out and where to find a form to send to GP practices can be found HERE.

What happens if I miss the deadline?

If you fail to opt out before the Type 1 deadline, your data will be collected as NHS Digital will begin to collect all patient data from GP practices from July 2021.

However, you can still opt out beyond this point.

Your data will stop being shared with the centralised database as soon as you register to opt-out of the sharing scheme, whether it’s before or after the opt out deadline.

However, bear in mind that the central database will continue to hold all the patient data that was collected before you registered to opt out.

Many feel the project is being sneaked out as publicity on the subject has been avoided by the Government and the Health Secretary Matt Hancock.

Some are fighting back threatening the Government with legal action over the new plan.

The campaign group Foxglove say: “Health Secretary Matt Hancock is trying to slip through a massive change to how NHS patient data is handled.”

They added: “Matt Hancock’s plan would mean incredibly sensitive data about all of us who use the NHS – including sexual health, mental health, criminal records – being pooled and shared.

“Hancock announced this plan quietly, via a single website, and set a deadline of June 23 for us to opt-out of our records being included.

Whilst campaigners acknowledge that the data could be used for the good of the NHS, they say the way the Government has gone about making these changes has been wrong and unethical.

Campaign groups such as Foxglove and the NHS patient-led campaign, Just Treatment, have said the scheme has been rushed through by “stealth.”

They say how health records are handled must be done in a transparent, trustworthy and legal way.

The government tried to create a similar database in 2014 called “care.data” but due to a huge public outcry, they were forced to abandon the project.

However, a spokesperson for the NHS told Express.co.uk that this time round, they are pleased to see a conversation being had among the public as to how their data is being used, stored and shared.

They told Express.co.uk: “NHS Digital’s improved collection of GP data will support vital health and care planning and research.

“The organisations using the data to do this may be public sector bodies, charities, academic institutions or commercial organisations but they will all have a legal basis and legitimate need to use the data, which must be used for healthcare planning and research purposes.

“We do not sell the data. We will recoup the costs of providing the data as we are not funded to do so. We will not allow it to be used for commercial purposes such as marketing, insurance or market access.

“Requests for data will be stringently assessed, applications will be scrutinised by both an independent group of experts as well as GP representatives before any record level data is accessed and we publish all data sharing agreements on our website.

“We then carry out independent audits and, where necessary, post audit reviews to check that data applicants are meeting their obligations and publish these audits on our website.

“We do these things to ensure that data sharing is as transparent, safe, secure and privacy-protecting for patients as it can be.”

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