Out-of-date warning on NHS data circulates again

23 May 2024
What was claimed

Patients must opt out by the end of June to prevent NHS England from selling all their health data.

Our verdict

This isn’t true. It refers to a policy from 2021 that was ultimately suspended.

An old clip from the One Show depicting TV presenter Matt Allwright warning viewers they have until 23 June to opt-out of “the Great NHS Data Grab” is circulating on social media.

In the segment, Mr Allwright advises that GP data will be up for sale from 1 July with the public required to fill out a form on the NHS Digital website in order to opt out of the sale.

A caption on at least one post sharing the clip asks: “Have you erased your data yet?”.

But this refers to an NHS data policy that has since been suspended.

The clip first aired in 2021 and refers to 23 June in that year. The policy it refers to—the GP Data for Planning and Research (GPDPR) collection—was suspended in 2021 following substantial public and professional concerns, and remains paused today.

It’s important to ensure information is up to date before sharing it online, as out-of-date information may mislead others.

What was GPDPR?

GPDPR was a major policy change scheduled to take place between June and September 2021, before it was ultimately suspended. Full Fact published an explainer at the time.

Under previous plans, NHS Digital was to begin collecting patient data from GP medical records in England on diagnoses, symptoms, test results, medications, information about physical, mental and sexual health, a person’s sex, ethnicity, sexual orientation and which staff have treated them. It would include any living patient, including children, and any data about patients who died after the collection started. That information would be pseudonymised and not include names or where people lived.

NHS Digital said this would be used to help improve NHS services, monitor care given, and support health research.

Patients would be given two means of opting-out, but the first option drew the most controversy. Patients had to fill out a form and submit it to their practice by 23 June 2021—this was covered in the One Show feature above.

The policy was controversial, drawing criticism from members of the public and GPs, many of whom were concerned the policy could damage patients’ trust in general practice.

One concern was whether or not data would be shared, or sold, to third parties, including private companies.

NHS Digital said at the time: “We never sell data for commercial purposes.” 

According to NHS Digital at the time, it charged those “who want to access its data for the costs of making the data available to them.” It says that, as it is not funded to do this work, NHS Digital does not profit from this.

The policy was paused as a result of these concerns, with NHS Digital saying it would take time to “better understand” and address the issues raised.

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