The NHS data grab: UPDATE! Grab postponed but you can still opt out.

NHS data grab Photo by Hunter Harritt on Unsplash

The NHS data grab has finally really got the coverage it deserves and people power has won a stay of execution. The 23 June deadline has yet to be formally withdrawn, though, so you might want to crack on and opt out.

At the end of this article we share how to go about opting out of the data grab…which you should still do, but here is the background to this growing news story:

On 19 May, Byline Times ran this scoop:

This has now been updated:

The calls to stop or, at least, delay this grab are growing…and with justification. Here’s Every Doctor’s summary of the situation:

On #23rdJune the govt is about to slip through the biggest grab of patient data in #NHS history. We have less than three weeks to stop it

If the government won’t drop its deadline we need to go to court for an urgent injunction

On #23rdJune unless we can force the government to pause this plan, the full GP records of every person in England will be scraped and sent into a central database. Our health information could then be made available to other parties – some of whom may use it for financial gain.

The government says you can opt out – but most people have never heard of this scheme and will have no chance to opt-out in time. And if you opt out too late, too bad – your health data will be in there forever.

So we have to take the govt to court. It’s our health data, so what happens to it should be our choice. We’ve formed a coalition of 5 organisations and an MP to take this scheme to court and stop the #NHSDataGrab. Time is of the essence. We need your help

Your health records being taken are highly sensitive. They include information on things like depression, autism, sexually transmitted infections, erectile dysfunction, and addiction – all to be made available for planning and research, including commercial research.

The data is ‘pseudonymous’, but this is quite different from anonymous. It means peoples’ identities will be disguised but could later be re-identified. The government has said little about what safeguards will protect this info – or on what terms corporations will access it.

We support the use of patient data for planning and research in ways that keep faith with patients and support the NHS – but the government’s rushed and opaque process has violated patient trust.

We can beat this, but we’ve got to move fast. Please support our crowdfunder with whatever you can afford to help us force the government to halt the GP data grab, and to rethink and seek meaningful patient consent.

Those involved include @Foxglovelegal @openDemocracy @allthecitizens @NPCUK @JustTreatment @DavidDavisMP

Originally tweeted by Doctors’ Association UK 💙 (@TheDA_UK) on 06/06/2021.

It’s worth reading this,, too, and then imagine Dido Harding (of the failed £37 billion test and trace fiasco) as head of the NHS. Remember Cambridge Analytica?

How to opt out (with thanks to Byline Times for the information):

To fully opt-out from having your NHS data used for purposes beyond your direct care is a two-step process:

1) If you have concerns and want to stop your and your family’s GP data being taken from your GP practice for purposes other than your direct care, you can do so by filling in and giving this ‘Type 1’ form to your GP practice. (This form allows you to include details for your children and dependants as well). This is the most urgent step; the deadline to get your form to your GP is 23 June 2021according to NHS Digital.

2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (for example, for “research and planning”) you should also do the following:

·         If you are opting-out just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.

·         If you have children under 13, you need to fill in this form and email or post it to NHS Digital – this form works for both you and your children.