RogerBW's Blog

The ghost of care.data returns 28 May 2021

This time the plan to sell all your medical records to the highest bidder isn't even being announced, presumably so that you don't find out about it in time to prevent it the way people did last time.

And this time there are two separate data pulls being set up, one from your GP records and one from hospital data. "You can opt out at any time", but that does nothing about any data that have already been pulled.

This is basically the same thing as care.data from 2014, all over again, only even worse. If you opted out of care.data then, some of your preferences may still be respected, or they may not. So here's what to do.

  • By 23 June 2021 get a "type 1 opt-out form" to your GP. There is not of course a single standard place to download this, but I found examples at an NHS practice site and another at one of the advocacy groups. You can still do this later, but that's the deadline for stopping all your records to date from going into the package.

  • Before you next attend a hospital, clinic, etc. use the NHS Digital opt-out process.

This still doesn't prevent the sale of your hospital history directly to private companies, or NHS England from doing the same thing again next year…

See also:
Have you opted out of care.data yet?


  1. Posted by Owen Smith at 02:43pm on 28 May 2021

    The NHS Digital opt-out process already said my option was to not share my data, so presumably this is still set from last time.

  2. Posted by Owen Smith at 02:44pm on 28 May 2021

    What makes them think they can sell or give away any of this information in the first place? Surely this is all covered by GDPR therefore it can't be passed on to anyone without asking for our explicit permission?

  3. Posted by RogerBW at 02:58pm on 28 May 2021

    Owen: your previous opt-out covers hospital data but not the new grab from GPs. And of course there are always exemptions for government bodies, and even where prosecutions have been brought for violations… nothing has happened.

  4. Posted by Owen Smith at 01:59pm on 29 May 2021

    So the UK government is breaking the law, and then either failing to prosecute itself or ignoring when others prosecute it. I'd say this a new low for the UK government, but it's just another example in a long list of awful behaviour.

  5. Posted by Owen Smith at 07:23pm on 12 June 2021

    My parents' GP will only accept an opt out on the form they provide, which I cannot find on their web site despite them claiming it is there. They also recommend against opting out claiming it would make care much worse should my parents need to go into hospital, because they wouldn't be able to transfer any data to the hospital on admission. As far as I can tell that is a complete lie.

  6. Posted by RogerBW at 07:30pm on 12 June 2021

    It is now being said that the deadline has been pushed back to September. Ish. Maybe.

    It is more work for the practice to tag a record as not to be uploaded than to let the default happen. The practice is required by law to respect your choice… though I suspect many of them won't bother, and will leave it up to the individual to discover the problem and take legal action.

  7. Posted by Owen Smith at 01:59am on 14 June 2021

    There is zero chance of anyone spotting that their opt out has not been honoured, so how does taking legal action help? And also once your data has been shared you can't put the genie back in the bottle, other organisations may have copies and how are you ever going to track all those down?

    I am deeply disturbed by the lies and misinformation my parents' GP is giving out. Makes me wonder what else they get up to.

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