Link to National Data Opt Out Patient Leaflet
The national data opt-out was introduced on 25th May 2018 and replaces the previous ‘Type 2 opt-out’. NHS Digital collects information from a range of places where people receive care, such as hospitals and community services. The programme provides a facility for individuals in England to 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.
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 any uses of existing confidential patient data for purposes other than those for which they were originally obtained such as healthcare planning, audit, population analytics, “risk stratification”, research, “commissioning”, commercial and even political uses.
The NDOO is not limited to electronic data and so includes paper records.
Secondary uses are not about information sharing between healthcare professionals. It will have no effect on the medical care that you receive either from your GP surgery or from anywhere else within the NHS or private sector.
Any patient that had a type 2 opt-out has had it automatically converted to a national data opt-out from 25 May 2018 and has received a letter giving them more information and a leaflet explaining the new national data opt-out.
Please note that The National Data Opt Out doesn't stop you contributing to any research where you are asked first. It only stops the use of your confidential medical information where you are not asked before your data is taken and used.
The national data opt-out choice can be viewed or changed at any time by using the online service at www.nhs.uk/your-nhs-data-matters
You can also use:
• The NHS APP
Patients who have registered for the NHS App using NHS login can set a national data opt-out using the app.
• By using the telephone service by calling 0300 303 5678.
• Using 'print-and-post'
If a patient is unable to use the online or telephone service, or would prefer not to, they can compete a paper form and post it. The form can be downloaded from www.nhs.uk/your-nhs-data-matters or requested by calling the telephone service on 0300 303 5678.
Will the NDOO stop my confidential GP information being uploaded to NHS Digital in the first place?
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, 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 as follows:
• Risk stratification schemes (often run by your local CCG)
• National clinical audits (such as the National Diabetes Audit)
• The Clinical Practice Research Datalink (CPRD)
• Extraction of de-identified information about you concerning any eMed3 Statement of Fitness to Work reports (i.e. sick notes), uploaded to NHS Digital, and subsequently passed by the HSCIC to the Department of Work and Pensions
• All extractions and uploading of identifiable information about you to NHS Digital, for any secondary purpose.
Type 1 secondary use objection will in no way affect how healthcare professionals provide you with direct medical care or prevent them accessing your medical record if and when appropriate, and with your explicit consent.
Those with a Type 1 opt-out will continue to be respected until March 2020, when the Department of Health and Social Care will consult with the National Data Guardian on their removal. This means that if a patient has not moved their preference to the national opt out programme, it will be removed and there will be no code on our clinical system to prevent the data being shared in this way.