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The National Data Opt Out


A factsheet


 


NHS Digital has launched the National Data Opt Out to


coincide with the EU GDPR.


www.nhs.uk/your-nhs-data-matters


 


What is the National Data Opt Out (NDOO)?


The NDOO is a mechanism by which individuals in England can control, to


a limited degree, certain aspects of their confidential medical information


and, in particular, what NHS Digital can do with it once in their


possession.


The NDOO only applies to confidential information, that is medical


information that can identify you, for example by containing your name,


DOB, address, NHS number etc. The NDOO is not limited to electronic


data and so includes paper records.


And the NDOO only applies to uses of your confidential medical


information for secondary purposes, that is unrelated to, and beyond, the


direct medical care that GP surgeries and other healthcare organisations


provide you with when you are unwell, or to keep you well. Secondary


purposes include healthcare planning, audit, population analytics, “risk


stratification”, research, “commissioning”, commercial and even political


uses.


Nearly always, you are not asked for your permission before your


information is used in this way.


It simply replaces the Type 2 (9Nu4) opt-out that has been in force for


some years, and which you were able to express, together with the


Type 1 (9Nu0) objection, via your GP surgery.


It is, therefore, nothing new.


If I set, or keep, my NDOO status at “do not allow”, what will this


mean?



  • Confidential medical information obtained by NHS Digital from GP


surgeries, hospital trusts, mental health providers and social care, will


not be released or disseminated by them in a format that can identify


you.



  • In due course, the NDOO will prohibit certain data extractions from


your GP record, where this involves confidential medical information,


and where your permission or consent would not be sought before


your data was released (so-called section 251 approval).



  • The NDOO will, eventually, prevent confidential medical information


leaving the Cancer Registry, certain other disease registries, the


Clinical Practice Research Datalink (CPRD); and



  • By 2020, all hospitals and other healthcare providers.


 


What will the NDOO/Type 1objection NOT do?



  • They will in no way affect the sharing of information for the purposes


of your medical care and treatment, e.g. where information is shared


between a GP surgery and a hospital.


It will not stop your GP using the Electronic Referral Service (eRS), the


Electronic Prescription Service (EPS), or GP2GP transfers of medical


records.



  • They will in no way affect the National Summary Care Record (SCR).


You can opt-out of the SCR via the surgery or our website.



  • The NDOO will in no way affect any local shared care record project or


scheme, such as the local care record.


You can opt-out of the Local Care Record via the surgery.



  • They will in no way affect EMIS Web data streaming.

  • They will in no way prevent you from registering for secure online


access to your GP record (Patient Online).


You can find more information about that on our website.



  • They will in no way affect situations where the surgery, or other


healthcare organisation, is legally required to share your information


(such as a court order or when mandated under section 259 of the


Health and Social Care Act – but see later).



  • They will in no way affect you being invited, when appropriate, for


any of the National Screening Programmes, such as


cervical/breast/bowel/abdominal aortic aneurysm/diabetic eye


screening.


You can opt-out of these separately, if you wish.



  • They will in no way stop information being provided to the National


Disease/Cancer Registries (run by Public Health England).


You can opt-out of this separately, if you wish.



  • They will in no way affect situations where the surgery, or any other


healthcare organisation, shares data in an anonymised or aggregate


(numbers only) format, in other words where that data cannot identify


an individual. Such as “open data”.



  • The NDOO will not stop:



  • Commercial sales of hospital data (HES) by NHS Digital

  • Lifelong linked medical histories being disseminated by NHS



  • Digital

  • Onwards release of data by non-NHS bodies (once they have

  • been provided with your information by NHS Digital)


 


What about Research?


The NDOO/Type 1 objection will in no way prevent you from taking part


in accredited medical research, at your GP surgery/local hospital/other


health organisation, where you have given your explicit consent to be


involved (i.e. you have been asked first for permission).


They will in no way prevent you from:



  • Giving blood

  • Joining the NHS Organ Donor Register

  • Signing up to the Anthony Nolan register to donate your blood stem cells or


bone marrow



  • Donating your DNA for medical research – with your permission

  • “Donating your Data” for medical research - with your permission

  • Contributing to UK Biobank - with your permission

  • Joining the 100K Genomes project - with your permission

  • Taking part in clinical drug trials

  • Joining dementia research

  • “Crowdsource” cancer research via games and apps

  • Donating your body to medical science after your death

  • Donating your brain to medical science after your death

  • Making a living donation (e.g. kidney, liver or bone)

  • Donating your hair (to make a wig for children and young adults)

  • Giving money (in a tax-efficient way) to a medical charity

  • Being contacted by your GP to invite you to take part in any research

  • Granting researchers access to your medical records, or information


extracted from your medical records - with your permission


 


Will the NDOO stop my confidential GP information being


uploaded to NHS Digital in the first place?


No. NHS Digital does not rely upon section 251 approval (anymore) for


data gathering, preferring instead to make such data collections


compulsory under section 259 of the Health and Social Care Act.


However, the existing secondary uses, Type 1 (9Nu0), opt-out that many


people have in force on their GP record will prohibit data (confidential


and, in some cases, de-identified) from being extracted and uploaded


from your GP record to NHS Digital. In addition, the Type 1 opt-out will


also prohibit section 251 approved data extractions, for example for “risk


stratification”, as well as the mandatory section 259 extractions.


So how do I maximally limit secondary uses of my medical


records, beyond my direct medical care, should I wish to?



  1. Set your NDOO status to “do not allow”, see later for how to do this,

  2.  


What about preventing NHS Digital releasing or disseminating


anonymised and pseudonymised data about me?


You cannot – directly. And you have no control over why they are doing


this, for what purpose(s), and to which organisation they are releasing


your information to.


But you can limit how much information NHS Digital gathers about you


from healthcare organisations, if you want, by maximally limiting the


secondary uses of your medical records, as described above.


So how do I set, check, or update my National Data Opt Out


status?


If you had previously requested a Type 2 objection to be in force, via the


surgery, then this will automatically have set your NDOO status to “do not


allow”. You should have received a letter from NHS Digital, confirming


this. Any children aged 13yrs or over will have received their own letter


as well.


It is no longer possible to directly view, set or change your NDOO status


at your GP surgery.


Anyone aged 13yrs or over can set their NDOO status via an online


service at www.nhs.uk/your-nhs-data-matters


 


Anyone aged 12yrs or younger, or acting on behalf of another individual


(i.e. as a proxy, perhaps with lasting power of attorney authority), cannot


do this online but will have to ring 0300 303 5678, or by printing off a


form and posting it.


More information about NHS data sharing, opting-out and objecting, and


the NHS databases can be found at on our website or at


www.nhsdatasharing.info


If you would like any further information about the NDOO, GDPR, primary


or secondary uses of your GP record, opting out, the NHS Databases,


access to your medical record, confidentiality, or about any other aspect


of NHS data sharing or your medical records, then please do contact the


surgery’s Caldicott Guardian / Information Governance lead.


 

 
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