How to opt out

On 19 July 2021, the Government announced that the GP data upload in England will not start until after three four tests are met – which will likely be some time in 2022 – but the Government has not said that you will hear anything from anyone directly about its plans, nor what (if anything) will have changed. As a result, we cannot guarantee that you will have any more information in August or September than you do now.

You do still have choices about what’s done with your data, but the Government has still not committed to directly telling everyone what it plans to do with NHS patients’ data – nor how everyone can exercise their own choices.

If you want to wait and see, you can do that – and you can join our mailing list to know exactly what is happening when we do.

If you have concerns and wish to opt out now, the process is this:

Choices available to you in the new GP data collection

None of the choices below will affect your medical care, or the data that is available for your care. A longer and different process is required for families with children or other dependents, which we walk you through.

If you live in England and want to stop your GP data leaving your GP practice for purposes other than your direct care, you can do so by filling in and giving or posting the form in step 1 to your GP:

1)  Protect your GP data: fill in and give this ‘Type 1’ form to your GP practice [PDF] [or MS Word version] – this one page form allows you to include details for your children and dependants as well. This is the most important step; the Type 1 opt-out is the only opt-out that will stop NHS Digital extracting your GP data.

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 – e.g. for “research and planning“ – you must use this process:

    • If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
    • If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.

There is no deadline for step 2, the National Data Opt-out (i.e. your non-GP data), but the sooner you do it, the sooner it takes effect. The National Data Opt-out will not stop your GP data being extracted by the new GP data collection.

N.B. If you opted out of care.data in 2014, then you shouldn’t need to do anything now. As most people did both a Type 1 opt-out and what is now a National Data Opt-out, you can check your NHS Digital opt-out status online at NHS Digital and your opt-out status at your GP will probably match the opt-out status shown there – although if you’re not sure, giving a a Type 1 form to your GP Practice now doesn’t have any risk.

If you don’t have a printer

While NHS Digital says you can e-mail enquiries@nhsdigital.nhs.uk and ask for paper forms to be sent to you for the GP data opt out and the national data opt out (for as many people as are in your household), we are hearing of delays in postage – in some cases of weeks.

We can also post forms to you. So if you prefer, or if the forms from NHS Digital don’t show up – or if you’re not sent what you need, or some other problem arises – you can e-mail printer@medConfidential.org with your postal address, stating how many adults and/or children under 13 you need forms for, and we will post you copies of the GP paper forms, for free, no questions asked. (Please do tell us if you have children under 13, or the online hospital data service hasn’t worked for you, and so you need the hospital data form as well as the GP data form).

If you can afford to make a small donation to support us in offering this service to others, we have a donation page. We will, of course, only use your details to send you the forms you want and we will delete them as soon as we have done that. (medConfidential is registered with the ICO to process personal data in this way.)

As new information or actions that you can take become available, we inform people via our mailing list:




GP data: As your ‘front door’ to the NHS, your GP holds the lifetime history of your GP care; all of your prescriptions, your diagnoses, your ailments, your tests and referrals – and the context for them all as well. You have the choice whether information from your GP record is copied outside of your GP practice for purposes other than your direct medical care. (This choice was created in 2010, and is between you and your GP only.)  Your GP treats you; other parts of the NHS tend to treat ‘a condition’.

Other data: The National Data Opt-out is intended to cover your data being copied from all other care providers, and NHS Digital, for purposes beyond your direct care. This choice will in time cover all hospitals, etc. but can at present only be set via NHS Digital, the option to do so via your GP having been withdrawn in 2018. (N.B. The National Data Opt-out does also cover your data leaving bodies such as Public Health England, which used to run the database of every patient who has ever had cancer, as well as other databases.)

Opting out: While in 2014 you could opt out of secondary uses (i.e. non-care uses) of your NHS data with a single form, now you must use at least two different processes – three, if you have children or dependents.

Out of hours care or other choices: If the GP receptionist you speak to tells you something about ‘out of hours care’, or that they don’t have to accept opt-out forms any more – largely because Government and NHS communications on this programme have been so bad they don’t know what it is – then point them at the link on the bottom of our letter / form, which points to NHS Digital’s own statement:

If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both. These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option.
http://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#opting-out


Re-use of your records beyond your direct medical care:
Choices not available to you

Exercising the opt-out choices linked above will protect you from some risks – certainly more risks than if you do not express those choices. Both opt-outs do precisely what the Department of Health claims they do, but they do not protect you as they could.

These choices do not, for example, currently:

As of 2021, some NHS bodies’ actions are still not compliant with the 2018 Data Protection Act, which implemented the General Data Protection Regulation (GDPR) into UK law. And several of the important safeguards promised in 2014 are still entirely missing:

  • The commercial re-use loophole remains open;
  • No ‘single-strike’ penalties are in place;
  • No significant contractual sanctions have been applied, despite serious breaches;
  • No Regulations have been laid to guide the Confidentiality Advisory Group;
  • NHS Digital is still releasing huge volumes of linked, individual-level patient histories rather than using safe settings;
  • The sole independent advisory group on collecting GP data – GPES IAG, the group that first raised concerns about care.data – was abolished without a full replacement.

The best way to have confidence in how your wishes will be respected, and in how your data will be used next month, is to see how your data was used last month. This, for all the reasons we list above, remains impossible.

96 thoughts on “How to opt out

  1. Pingback: ID in the News» Blog Archive » Private companies set for access to patient data for just £1

  2. Pingback: ID in the News» Blog Archive » Eight weeks to inform patients their data is going to be harvested, GPs warned

  3. Pingback: Ready for your medical records to be harvested by private firms?- PRSD

  4. Pingback: Personal information at your local GP's

  5. Pingback: North West Green Party warns weeks left to protect medical history - Manchester Gazette

  6. Pingback: Less Than 5 Weeks Left To Protect Your Medical History | Same Difference

  7. Pingback: Why I’m opting out of sharing my personal medical records | learn4kicks

  8. Pingback: Cameron’s #CostofNHSConfidentialityCrisis

  9. Pingback: Healthmatters Research organisations promote medical record data grab

  10. Pingback: Why I’ve opted-out of care.data | inforightsandwrongs

  11. Pingback: Sharing NHS Data

  12. Pingback: That NHS ‘junk mail’ leaflet DOES require action — NOW | Orphans of Liberty

  13. Pingback: England, act early in 2014: the NHS care.data junk mail leaflet | Churchmouse Campanologist

  14. Pingback: How to opt out | medConfidential | SteveB's Pol...

  15. Pingback: healthy optout aesthetics? | imagine art -||+ there about?healthy optout aesthetics?

  16. Pingback: How to opt out and keep your records secret | Street Democracy - where it should reach

  17. Pingback: Sale Of NHS Data: Invasion Of Privacy & Conflict Of Interests | On The Matter Of Boots

  18. Pingback: Opting Out of your Personal National Health Data Becoming a Tool of the NWO Social Services Database* | Hwaairfan's Blog

  19. Pingback: Are you happy for big business to have your confidential medical records? | Vox Political

  20. Pingback: Is the UK Government Selling You Off? | OUseful.Info, the blog...

  21. Pingback: The Health and Social Care Act 2012 | Arteman's Blog

  22. Pingback: The Health and Social Care Act 2012 | The Ire of Arteman

  23. Pingback: ICO blog: NHS patient information and the Data Protection Act | World Medical Times

  24. Pingback: Sharing/using patient health record information | Even stars explode

  25. Pingback: Do you Care for your Data? What care.data means for NHS patients in England | informed

  26. Pingback: CareData | After Work

  27. Pingback: Will the government really penalise GPs whose patients opt out of data sharing? | Vox Political

  28. Pingback: NHS = No Health Secrets? | Looking On

  29. Pingback: BCfm Politics Show with Tony Gosling | BCfm Politics Show

  30. Pingback: More on Care Data | Longrider

  31. Pingback: OMG! YOUR MEDICAL RECORDS ARE ABOUT TO BE SOLD TO THE HIGHEST BIDDER! | THE ONLY THOUGHTS THAT TRULY MATTER ARE YOURS......

  32. Pingback: Living With Mesothelioma -My Diary- A great Article about Asbestos on Ships. More Rain and Winds | Rayandmave's Blog

  33. Pingback: Light Blue Touchpaper » Blog Archive » NHS opt out: not what it seems

  34. Pingback: The Most Chilling Words in the English Language | Longrider

  35. Pingback: foreign objects | blinking ti . me

  36. Pingback: The Health and Social Care Act 2012 | Arteman Tech

  37. Pingback: Blog | Counselling in Cambridge

  38. Pingback: *** UK ALERT *** NHS England leaflet misleads patients about opt out | Privately Investigating

  39. Pingback: Open Thread 10/02/2014 | Max Farquar

  40. Pingback: Concerns over patients medical records. | B26 Community

  41. Pingback: NHS Records for Sale - Petition - AnonWolfTV

  42. Pingback: Investigating The New Imperialism | UK: ACT NOW to protect your medical confidentiality

  43. Pingback: Pastor Mikes Report | UK Police And Companies Will Have Access To Database Of All England’s Medical Records

  44. Pingback: seeking advise on opt out

  45. Pingback: UK Police And Companies Will Have Access To Database Of All England’s Medical Records - Give Back Our Freedom *Give Back Our Freedom

  46. Pingback: How to opt-out of care.data - Shout Out UK | Shout Out UK

  47. Pingback: Sharing NHS records, to opt out of care.data or not? - The Dorset Knob

  48. Pingback: Friday 14th February–Valentines Day « Keith's Blogs

  49. Pingback: Do you care about who has your medical information? If so, act now.

  50. Pingback: There’s a Surprise… | Longrider

  51. Pingback: UK healthcare data, notice and consent | Robin Wilton's Esoterica

  52. Pingback: medConfidential: Act now to preserve your medic...

  53. Pingback: NHS England faces growing pressure to delay Care.data medical records plan | Quick-PCQuick-PC

  54. Pingback: Care.Data Delayed | Longrider

  55. Pingback: Stalled – the plan to share NHS patients’ confidential information with big business | Vox Political

  56. Pingback: Troubled about big data - The Speaker Management Company

  57. Pingback: Government postpones medical records data project | hgdover50sforum.org.uk

  58. Pingback: NHS England puts patient database on hold | CloudBackupCheap.com

  59. Pingback: I’m a Scaremonger Apparently. | Longrider

  60. Pingback: I just used Fax Your GP to Opt out of sharing my medical records | Quest 4 Harmony

  61. Pingback: Viva la NHS | Echo Britain

  62. Pingback: Health: Hospital Records Of All NHS Patients Sold To Insurers - UK Motorbike Forum

  63. Pingback: The end of patient confidentiality as NHS information is sold to insurers | Vox Political

  64. Pingback: | UK Police And Companies Will Have Access To Database Of All England’s Medical RecordsEndtime.pl

  65. Pingback: Echo Britain

  66. Pingback: Keeping your medical records safe? They don’t give ATOS… | The Wolf of Bridge Street

  67. Pingback: England: NHS care.data project postponed to autumn 2014 | Churchmouse Campanologist

  68. Pingback: LAST DAY TO OPT OUT! | Cre8 Solutions

  69. Pingback: The Unsecured State Part 3 – 2,000+ NHS Security Vulnerabilities (Disclosed) ← Terence Eden's Blog

  70. Pingback: Keep your health records private, here’s how …, | The Blog of Knitted Fog

  71. Pingback: Episode 6 – Free Speech – Insulting and Offending and Defining Racism | Reflective Air Podcast

  72. Pingback: Pirate Party UK – 5 years old today | Roaming Learning Technologist

  73. Pingback: TRust in IT: Factors, metRics, Models | IT as a Utility Network+

  74. Pingback: Med Confidential – The Right To NOT Have My Medical Records Traded In “The Market” | ukgovernmentwatch

  75. Pingback: Some interim innovations enabling future deployments of verify infrastructure | DisruptiveProactivity.com

  76. Pingback: Opting out | After Work

  77. Pingback: Tory NHS patient data selloff being sneaked through before the election « Stop UK lies & corruption

  78. Pingback: medConfidential Bulletin, 8th June 2018 | williambowles.info

  79. Pingback: Is the government telling us the truth about GDPR and our NHS medical data?

  80. Pingback: Keep Your Medical Records Confidential » Helix Clinic

  81. Pingback: NHS = No Health Secrets? | Looking On

  82. Pingback: The Guardian view on medical records: NHS data grab needs explaining | Editorial - The Digital Journo

  83. Pingback: La saisie des données du NHS retardée de trois mois - aidememo.net

  84. Pingback: British Medical Association calls for clarity on patient deadline for opting out of NHS Digital's GP data grab - DUK News

  85. Pingback: Where to start this month? – Jem Brookes's Blog

  86. Pingback: NHS Digital and your data – reminder | Leatherhead Living

  87. Pingback: BMA warns NHS Digital's own confidentiality guardian could halt English GP data grab unless communication with public improves - DUK News

  88. Pingback: Privacy fears over NHS plans to share GP medical records with third parties – HSE BAZR

  89. Pingback: BMA warns NHS Digital's own confidentiality guardian could halt English GP data grab unless communication with public improves • The Register | Love Africa News

  90. Pingback: GPDPR (aka NHS Data Grab)- a guide for practices - Doctors' Association UK / DAUK

  91. Pingback: The NHS still plans to share your data - Privacy Compliance Hub

  92. Pingback: Opt out of the NHS data grab – while you can – Freedom For Information

  93. Pingback: NHS Data Grab- Form to prevent your information being shared. - Southend Pensioners

  94. Pingback: If you are a GP and not sure what the NHS data grab (GPDPR) is all about, Rosie Shire from the DAUK GP committee has written a guide to explain it, and what practices need to do to full-fill their duties. - Doctors' Association UK / DAUK

  95. Pingback: SWKONP Press Release July 3rd 2021 on Leamington Mega-Lab | Keep Our NHS Public

  96. Pingback: Le NHS prévoit de partager les données des patients GP reporté – mais de nouvelles mesures répondront-elles aux inquiétudes ? -Ecologie, science - ecomag

Comments are closed.