Your choices

For now, you must use NHS Digital’s online / paper process for you and your children separately to cover some of your health data, and a paper form for your whole family to protect your GP data.

Yes, this is a mess…

A National Data Opt-out launched on 25 May 2018. As a result, you now have to take several steps to make consent decisions for yourself, and extra steps for your children or other dependents.

It was announced that, from October 2018, you should be able to easily view how data about you has been used, so you can verify the effects of your consent choices. We await delivery of this promise. [March 2021: we’re still waiting]

People who had already opted out of the use of their data for purposes beyond their direct care were written to personally during the summer of 2018 – but there was no commitment to directly inform those who had not already expressed their choice. In other words, unless you happened to see a poster or hear a radio ad, you and a very large number of other NHS patients were likely kept in the dark.

Until you can see how data about you is actually used, and details of those uses, the Government expects you to base your decision solely upon the various statements and assertions that are made about them. We provide links below to evidence of ways in which some of these statements and ‘guidance’ are breached in practice.

In the absence of evidence that reassures you, medConfidential’s advice is (as it always has been) to follow the precautionary principle – opting out now is safer, as you can change your mind at any time. Once your data has been copied or released, however, it cannot be recovered.

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

Re-use of your records beyond your direct medical care:
Choices available to you

None of these choices will affect your medical care, or the data that is available for your care.

GP data: As your ‘front door’ to the NHS, your GP holds the lifetime history of your GP care – your prescriptions, your ailments, your tests and referrals, and the context for them all. 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 leaving all other care providers, and NHS Digital, for purposes beyond your direct care. This choice will, in time, cover all hospitals, etc. and can (at present) only be set via NHS Digital – the option to do so via your GP having been withdrawn in 2018. The National Data Opt-out does also cover your data leaving bodies such as Public Health England, which ran 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 (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.

If you 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 this form to your GP:

Your GP data: fill in and give this form to your GP [PDF] – allows you to include details of your children and dependents.

If you want to stop your non-GP data (e.g. hospital or clinic treatments) being used for purposes other than your direct care, e.g. “research and planning“, you must use NHS Digital’s online process:

Other NHS data: use NHS Digital’s online process – if you have have any children under 13, NHS Digital’s online process excludes* them.

*If you do have have children under 13, or other dependents, see this page about the process that excludes them.

If you don’t have access to a working printer, e-mail with your postal address and we will post you one, for free, no questions asked. If you don’t have e-mail, you can text your address to 07980 210 746.

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 and will delete them as soon as we have done that. (medConfidential is registered with the ICO to process personal data in this way.)

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 – 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.

81 thoughts on “Your choices

  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 | 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 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 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


  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 - Shout Out UK | Shout Out UK

  47. Pingback: Sharing NHS records, to opt out of 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 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 |

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

  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

  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 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 |

  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 |

  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

Comments are closed.