How to opt out

care.data ‘pathfinders’ announced

The ‘pathfinder’ areas announced on 7 October 2014 are:

  • Leeds (3 CCGs: West / North / South and East)
  • Blackburn with Darwen CCG
  • West Hampshire CCG
  • Somerset CCG

NHS England has not yet published a list of individual GP practices that are involved.

If you do have any concerns about care.data, and if you haven’t done so already, our advice continues to be to opt out now.

N.B. If you opted out of care.data earlier this year and had the ‘dissent codes’ added to your GP record, these will still work so you should not have to opt out again.

The basis of the care.data programme remains unchanged – identifiable medical information will be extracted from the GP record of every man, woman and child in England; this data will be centralised, linked with information taken from other parts of the NHS and made available to an open-ended array of organisations and companies for ill-defined purposes.

Opt out form

All you  need do is write a letter to your GP or download a simple form (link below) instructing your doctor to opt you out, which you can fill in and post or drop into your surgery reception for their attention.

If you have any problems getting your surgery to understand what you are opting out of, or if they hand you an opt out form for something else, e.g. the Summary Care Record, then let us know using our handy formFix tool – you tell us, and we’ll send them some details.

Dr Neil Bhatia, a Hampshire GP, has written the text of a leaflet with a tear-off form that you can use for yourself, your minor children (i.e. children below the age of consent – older children must opt out for themselves) and anyone for whom you hold lasting power of attorney:

Opt out form (PDF)

Please do take a few moments to e-mail this PDF to your family, friends and colleagues, or send them the link to this page – www.medconfidential.org/how-to-opt-out – or share it on social media. You might even print off copies of the form (which conveniently prints double-sided and folds to fit in a DL envelope) to give to others who may not have heard about what’s going to happen to their medical records, and won’t know what they can do.

Dr Bhatia also provides more information on the care.data scheme on his website: www.care-data.info

Opt out letter

If you do not want confidential, identifiable information from your medical records to be uploaded and passed on for purposes other than your medical care you can opt out by telling your doctor. You don’t have to book an appointment to do this, you can simply send a letter.

As an alternative to the form above, we provide a letter in Microsoft Word (.doc) format, editable Rich Text (.rtf) format and as an Adobe Acrobat (.pdf) PDF for you to fill in and send to your doctor. We have updated this letter so that you can use it to opt out your children or adults for whom you are legally responsible as well.

Simply click on one of the links below to download and print off a copy, fill in your details and the details of your minor children (i.e. children below the age of consent – older children must opt out for themselves) and/or anyone for whom you hold lasting power of attorney, sign it and send it to your GP:

Opt out letter (PDF)

Opt out letter (MS Word)

Opt out letter (Rich Text)

Opting out will not affect the care you receive and you can change your mind at any point and opt back in if you like. Opting out will not prevent your GP from being paid for care provided – information needed for those payments should only leave the practice in summary (i.e. anonymous) form.

If you have any specific concerns, we recommend you speak with your GP.

As you will see from the letter, there are TWO codes that your doctor will need to add to your record – one to prevent your information being uploaded from the GP practice, and one to stop the Health and Social Care Information Centre from passing on any identifiable data it gathers from any other care context, e.g. hospital records or clinics.

To keep informed about the progression of the care.data scheme, please:

Our newsletter is sent using MailChimp.
We will not share your details with anyone else.

What’s this all about?

Under changes to legislation, your GP can now be required to upload personal and identifiable information from the medical record of every patient in England to central servers at the Health and Social Care Information Centre. Once this information leaves your GP practice, your doctor will no longer be in control of what data is passed on or to whom.

This information will include diagnoses, investigations, treatments and referrals as well as other things you may have shared with your doctor including your weight, alcohol consumption, smoking and family history. Each piece of information will be identifiable as it will be uploaded with your NHS number, date of birth, post code, gender and ethnicity.

NHS England – the body now in charge of commissioning primary care services across England – will manage and use the information extracted by the Health and Social Care Information Centre for a range of purposes, none of which are to do with your direct medical care. Though the official leaflets talk a great deal about research, these ‘secondary uses’ for which your data may be used include patient-level tracking and monitoring, audit, business planning and contract management.

In September 2013, NHS England applied to pass on your information in a form it admits “could be considered identifiable if published” to a whole range of organisations that include – but are not limited to – research bodies, universities, think tanks, “information intermediaries”, charities and private companies.

Though you may be told that any data passed on will be ‘anonymised’, no guarantees can be given as to future re-identification – indeed information is to be treated so that it can be linked to other data at patient level – and NHS England has already been given legal exemptions to pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. The Health and Social Care Information Centre already provides access to patient data, some in identifiable form, to a range of ‘customers’ outside the NHS, including private companies.

What happened earlier in the year?

In January 2014, NHS England sent out a leaflet entitled Better information means better care (2MB PDF) via junk mail. It was not addressed directly to you as a patient and it deliberately didn’t include an opt-out form. The leaflet said you should “speak to your GP practice” if you wanted to opt out. This was misleading and could have wasted your time and potentially wasted valuable GP appointment time as well.

You can read more about how we had to get the opt outs fixed, but on 25 February 2014 the Secretary of State for Health confirmed to us in writing the operation of the opt out codes. HSCIC has published a page explaining exactly how they will work:

http://www.hscic.gov.uk/article/3915/What-we-will-collect-from-GP-records-under-caredata

N.B. As well as opting out, you may want to write to your MP about this. The Health Select Committee is now conducting an inquiry into care.data, and we gave evidence to its first session.

Tell your friends:
via twitter share on facebook

74 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

Comments are closed.