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Data Sharing Changes - September 1st 2021

Last week I was speaking with my brother in law and he asked me my view on the upcoming changes to the use of NHS records. I was at a complete loss as I had not heard anything about this, and thought he may have his facts wrong. 

So, I Googled it and sure enough there are some very important changes to the use of patient data, and from looking at the various articles in the last few days it has become clear that these changes are being brought in under the radar.

In a nutshell:

  • Your NHS records (pseudonymised) will be shared OUTSIDE the health service unless you opt out this month.
  • NHS DIGITAL is looking to centralise digital records from across England into a single database, which will be shared with researchers and commercial partners.
  • Patients have until June 23, 2021 to opt-out of the NHS data being shared with researchers and companies, outside of the national health service.

Privacy campaigners have raised serious concerns about these plans from NHS Digital, which will see the medical histories of more than 55 million patients in England imported into a new database, including mental and sexual health data, criminal records, and more sensitive information such as drink and drug problems.

Whilst it does say that the database will not include patient details, addresses, images or videos from consultations, legally restricted data such as IVF treatment or gender reassignment, it does clearly say that in some cases this data may be released.

The June 23rd deadline (at time of writing) applies to those who live in England and are registered with a GP clinic. NHS Digital, which runs the country’s healthcare IT systems, says a new centralised database is needed because the current system used by GP surgeries, known as General Practice Extraction, is over a decade old.

So, what will happen with all this patient data being collected and shared? The information will be made available to academics and commercial third parties, privacy campaigners have claimed.

The records will purportedly be used for research and planning, with NHS Digital claiming that records "decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes, and cancer."

NHS Digital shares a list of who it shares its data with, which is updated each month, although campaigners say it can be extremely difficult to find out who sees the data due to the NHS' "opaque" commercial relationships.

For its part, the NHS says that patient data is never used for insurance or market research purposes, promoting, or selling products or services, or advertising.

The NHS also states that personal medical records will be pseudonymised to keep your identity secret. However, the code to unscramble the pseudonymised data will be held by the NHS and may be used to reveal the identity whenever there is "a valid legal reason". 

Privacy campaigners claim overall plans are "legally problematic" and that patients have not been given enough time to opt-out of the new policy. 

Digital rights campaigners have claimed that "Very few members of the public will be aware that the new processing is imminent, directly affecting their personal medical data."

To remove yourself from the database, you’ll need to fill out a form and submit it to your GP.

I am not certain as to what happens then as I have seen no instructions nor have any patients contacted us, which goes to show that this change has been kept under wraps and is being brought in quietly to avoid debate.

If you don't opt out before the deadline, your medical data will become a permanent feature of the NHS Digital database. Opting out after June 23rd will still work, but will only apply to future data – any historic data will still be available to researchers, academic and commercial partners of the NHS.  

This isn't the first time the NHS has attempted to bring together GP records from patients across the country into a central database. Back in 2013, the Care.Data programme was sold as a way to centralise digital health records; however, the project was abandoned three years later over privacy complaints.

The UK’s data regulator is believed to be producing an impact assessment, focusing on data protection, around the current plans from the NHS.

It has been said: "Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives. During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world-leading vaccine programme, and identify hospital treatments, which has prevented people dying from Covid”.

There is a claim that the NHS has engaged with doctors, patients, and data, privacy, and ethics experts to design and build a better system for collecting this data.

The data will only be used for health and care planning and research purposes, by organisations that can show they have an appropriate legal basis and a legitimate need to use it. The NHS has also said:

"We take our responsibility to safeguard patient data extremely seriously”, as well as noting that "Researchers wanting to access this data will need each request to be approved by the Independent Group Advising on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG), with representatives from the British Medical Association and the Royal College of General Practitioners."

I cannot agree with some of the comments above. I am not aware of any engagement on this project and the cynic in me wonders if this has been brought in quietly for obvious reasons under the radar and during this unprecedented workload period.

At the weekend this subject was raised on our PCN WhatsApp group by concerned staff who had read articles in Pulse and others. Like myself, this was the first others had heard and they were concerned as to the implications under GDPR and the way it seems likely to be implemented.

The BMA and others continue to push for more time to have discussions with patients. On June 8th, Parliament granted a 2-month delay (from July until September 1st) for implementation. If sufficient time is not given, we may decide to batch everyone out initially and allow discussions with patients.

So, am I going to opt out or not?  Again, being cynical I think big brother will win whatever we do. This seems like just another step to the privatisation of the NHS and third parties will gain financially by accessing such information.

 


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