NHS ‘data scrape’: How to opt out of plans to share patient information by June 23 deadline

·5-min read
A registration form and a stethoscope at the Temple Fortune Health Centre GP Practice near Golders Green, London.
The 'digital scrape' will take people's data from GP records and incorporate it into a database. (PA)

The government is under fire from privacy campaigners who have criticised plans to include patients' data in a huge database that could be made available to third parties. 

Patients have until 23 June to opt out of their data being included in the 'digital scrape', which will incorporate information including data on domestic violence and sexually transmitted infections (STIs). 

The data will be shared with third parties, though NHS Digital - which is running the programme - says it will only be used for research and planning purposes and will not allowed to be used solely for commercial purposes.

The move has come under fire from privacy campaigners who are urging health secretary Matt Hancock to drop the plans and hold a full consultation. 

Health Secretary Matt Hancock delivers a speech on the COVID-19 vaccine programme at the Jenner institute in Oxford. Picture date: Wednesday June 2, 2021.
Campaigners are urging Matt Hancock to drop the plans. (PA)

Foxglove, which campaigns to stop the abuse of digital technology, and NHS patient-led campaign Just Treatment are urging people to sign a petition to stop the database from being formed.

Senior GPs in east London are already believed to have called on colleagues to refuse to hand over patient data.

But what does the digital scrape actually entail and how do you opt out of it? 

What exactly is a 'digital scrape' and what is this one specifically? 

Digital scraping, or data scraping, is the process of extracting information and importing it into a spreadsheet or database. 

In this case, campaigners say NHS Digital will port the medical histories of more than 55 million patients currently held by our GPs into a central database.

What data is the NHS collecting?

Campaigners say the plan means sensitive data, including sexual health, mental health and criminal records, will be collected - and potentially shared with third parties.

The NHS says it will only collect "structured and coded elements of the GP record". This means any data that could identify a patient, such as their date of birth, NHS number or full postcode, would be replaced with unique codes that means patients cannot be directly identified. 

However, NHS Digital can use software that will convert those codes back to data, allowing patients to be identified "in certain circumstances and where there is a valid legal reason".

NHS Digital says it will not collect people's entire GP records, and will not collect the following:-

  • patient names and full addresses

  • written notes (free text) of any consultations or interactions between patients and clinicians

  • images, letters, videos, or documents

  • medicines, appointment, or referral data over 10 years old

  • legally restricted data such as in vitro fertilisation treatment or gender reassignment

Why is the NHS gathering our data?

The NHS says it uses patient data to improve healthcare services, helping to find better treatments and improve patient care.

The data helps decide what new health and care services are required in a local area, it says, as well as supporting research and helping find cures for serious illnesses like heart disease, diabetes and cancer.

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On its website, it uses coronavirus as an example, saying GP data collected as part of the COVID response is being used by the University of Oxford RECOVERY trial, which is looking to find ways to improve the treatment for people with COVID-19.

If it can help people, what's the problem?

Privacy campaigns are concerned about what will happen with that data once it's incorporated into a central database. 

The data will be made available to "third parties", which could include private companies, hence their concern. 

They also say the scheme is being rushed through without proper consultation. 

Foxglove's petition says: "Health data could be used for the good of the NHS. But any changes to how our health data is handled must be done in a transparent, trustworthy, legal way.

"The scheme is being rushed through by stealth. Patients have been denied a meaningful say in what happens with their data. No safeguards have been included to prevent private companies using our data for their own profit."

There is also a concern that it any anonymisation could be reversed further down the line.

Is the NHS actually selling the data?

NHS Digital says it doesn't sell data, but does charge those who want to access it for the cost of making that data available to them. 

It says these charges cover the cost of running the service and means the organisations who need access to the data bear the costs of providing it, rather than the NHS.

It says the data will only be used for health and care planning and research purposes by organisations who have "a legal basis and legitimate need" to use it, and says it does not allow data to be used solely for commercial purposes.

However, critics have pointed out that the use of the word "solely" could allow some wriggle room when it comes to how the data is shared. 

What can I do if I don't want my data included? 

There are several ways to opt-out but you need to do it before 1 July when the new data system comes in, GPs are recommending you submit the form no later than 23 June in order to give them time to process it and inform NHS Digital.

If you do it after that date, you will only stop future data from being included in the system.

Opting out is free. Many websites have popped up offering a fee to fill out the form for you and issuing scary but often inaccurate warnings about what this change can do to your privacy.

The first way of opting out is called a Type 1 opt-out, all you need to do is fill in a form and submit it to your GP.

A Type 1 opt-out has been around since 2013 and if you've already filled one out then you don't need to do it again.

The Type 1 opt-out stops your GP from sending your data to NHS Digital.

You can only get a Type 1 form from your GP.

The second type of opt-out is called a National Data Opt-Out, which allows your GP to share your data internally, but not share it with private organisations.

You can find an online version of the National Data Opt-out here.

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