No, the NHS isn’t selling your data – so what is this opt out all about?

NHS Digital outlines how patient data is used

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GP practices will soon start sharing patient data, with weeks to go until NHS Digital launches a reworked platform. By July 1, the new platform will be capable of taking information loads which “far exceed” those proposed in other programmes, including care.data. Naturally, this will have spooked some people who want more transparency about where their data goes and where collectors use it.

Where is the NHS sharing patient data?

GP practices will share data with NHS digital unless their patients say otherwise.

The service is due a revamp, which will land on July 1 as the General Practice Data for Planning and Research (GPDPR).

The revamp, according to NHS Digital, improves on the General Practice Extraction Service (GPES).

But many are concerned that if they don’t opt out, their details could be sold on to huge companies.

One Twitter user wrote: “Mass NHS data is useful for research but worrying imminent harvesting of patient records: a) hasn’t been properly explained to the public b) could be sold to private companies.”

Another said: “This is really hard – I’m very happy for my NHS data to be used for academic non profit purposes but don’t want it sold to private companies – there seems to be no choice in the opt out – all or nothing?”

A third added: “So all NHS data to be flogged to the highest bidder, unless you can fill in some form online, from a govt incapable of keeping online data safe? Chancers every bloody one of them. And sold to whom? Med insurance companies, no doubt?”

Another posted: “Very important. You have only until June 23 to download a MS-word form, fill it and submit to your GP to opt out of your data being packaged by NHS data and sold to third parties including Amazon.”

However one pointed out: “The first thing NHS digital says on it is they will never sell the data… doesn’t the ability for the NHS to analyse this data centrally seem like a good thing? Could use this to see health trends, emerging viruses or diseases, flu outbreaks, lots of benefits in big data analysis.”

The GPDPR intends to collect includes GP records, NHS numbers, postcodes and dates of birth.

GP records disclose birth and death records, mental, sexual and physical health.

They won’t collect names or complete addresses, and anything else is effectively encoded to prevent identification.

The NHS said: “NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them.

“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 the data”

In their announcement, the service added any information collected would aid “better planning of healthcare services and for use in medical research.”

So no, you’re details aren’t being sold off to mega-corporations such as Amazon, Coca Cola or McDonald’s or being used for marketing purposes.

More specifically, NHS Digital said information collected from patients could go to “clinicians, researchers, academics and commissioners”.

These include the NHS itself and ongoing projects such as Oxford University’s Covid RECOVERY trials.

The latter research is working to discover whether dexamethasone improves survival chances following covid exposure.

Accelerated data collection started during the pandemic last year at the behest of the Department for Health and Social Care (DHSC) and helped services understand the disease and its effects.

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Details helped back research and bolstered the UK’s widely successful vaccine programme.

NHS Digital claims the data remains critical in the days and months following the pandemic’s peak.

New disorders such as long Covid require enhanced investigation, they say, and demand for services has surged.

But privacy campaigners believe the data will also go to the private sector, and critics warn people could crack anonymised data.

Some GPs have refused to share patient records with the GPDPR, including all 36 surgeries located in Tower Hamlets.

Dr Ameen Kamlana, a GP in the East London borough, said well-utilised records has “immense” benefits, but the DHSC’s plans have been “rushed”.

He told The Guardian the Government has not adequately conveyed coming changes to the public, which now has just weeks left to provide consent.

Dr Kamlana added people should be aware GPs will share their “most intimate private details” ahead of June 23.

An NHS Digital spokesperson said: “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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