A new national data opt-out was introduced in May 2018, following recommendations from the National Data Guardian. People can opt out of having their confidential patient information shared for reasons beyond their individual care, for example for research and planning.
Why is there an opt-out?
The National Data Guardian conducted a review into the use of NHS data in 2016, and examined the most appropriate model for collecting and using patient data across the NHS. She concluded that a single opt-out model should be adopted across the health and care system in England, and the Government has accepted her recommendations. You can find out more about why an opt-out model is most appropriate, rather than one based on an opt-in or consent.
What does it apply to?
The national data opt-out applies to the use of confidential patient information for research and planning purposes.
The national data opt-out does not apply where:
- data is shared for your individual care
- there is a risk to public health or data is required for monitoring and control of infectious diseases, for example during an epidemic
- there is an overriding public interest, for example:
- reporting of gun wounds in line with GMC guidance
- there is a legal requirement to share information, for example:
- investigations by regulators of professionals (eg General Medical Council investigating a registered doctor’s fitness to practice)
- NHS fraud investigations
- notification of food poisoning
- you have consented to take part in a specific project
- anonymised data is used.
Find out more here.
Your national data opt-out will initially be applied by NHS Digital from May 2018, with Public Health England following shortly after. By 2020, all health and care organisations across England must apply the national data opt-out.
What is the opt-out question?
The national data opt-out offers the following choice:
Your confidential patient information can be used for improving health, care and services, including:
- planning to improve health and care services
- research to find a cure for serious illnesses
I allow my data to be used for research and planning:
- Yes [DEFAULT POSITION]
If you do not set a choice, it will be assumed that you are happy for your confidential patient information to be used for research and planning.
What is confidential patient information?
Confidential patient information identifies you and says something about your health, care or treatment. You would expect this information to be kept private. Information that only identifies you, like your name and address, is not considered confidential patient information and may still be used: for example, to contact you if your GP practice is merging with another.
How can I opt out?
You can set your choice online at: nhs.uk/your-nhs-data-matters
You will need:
- your NHS number (a 10 digit number that you should be able to find on any document sent to you by the NHS, for example a hospital referral letter or prescription)
- to have an email address or phone number registered with an NHS service.
Alternatively you can call the helpline: 0300 303 5678
Or download a form here to opt out via post.
If you want to set a national data opt-out for your children, or where you have a formal proxy to make decisions on behalf of someone else, you can download a form here or phone the helpline on 0300 303 5678.
Between 25 May and until the end of September, GP practices will be still able to set a Type 2 opt out if requested. But NHS Digital will convert these to the national data opt-out and communicate with individuals what is happening. NHS Digital will retire the Type 2 opt out codes for GPs from early October.
What is the impact if I opt out?
Your individual care will not be affected if you opt out.
Confidential patient information is used to improve health, care and services across the NHS, for example for monitoring patient safety, developing new treatments or planning NHS services. Having data about as many people as possible ensures that NHS can make the best possible decisions. For example, if lots of people from a particular age group, ethnic minority or local area opt-out, then that group will not be represented in research findings. You can find out more here.
How does the new opt out compare to other opt outs?
The national data opt-out applies to the use of confidential patient information for research and planning.
Two different opt-outs have been offered since 2014, initially as part of the care.data programme:
- Opt-out of information leaving your GP surgery (‘Type 1’ opt-out): If you have asked your GP surgery to prevent your confidential information from leaving the GP surgery for purposes other than your individual care, this opt-out will continue to apply. The Government will consult with the National Data Guardian about the removal of this opt-out in 2020.
- Opt-out of confidential patient information being shared from NHS Digital (‘Type 2’ opt-out): This opt-out meant that NHS Digital would not provide your confidential patient information to approved organisations other than for your individual care. All ‘type 2’ opt-outs will automatically be transferred across to the new national data opt-out and NHS Digital will write to everyone who has this opt-out to explain the situation by August 2018.
Read about the differences between the national data opt-out and care.data.
There are also some other opt-outs in the health system, including:
- Summary Care Record: The most important information in your patient record is stored in a central ‘Summary Care Record’ (SCR), including data about your current medicines and allergies so that you can receive the safest care in an emergency. An opt-out is available for those patients that do not want to have an SCR. This could affect your individual care, and is separate from the new national data opt-out.
- Cancer registry: The National Cancer Registration and Analysis Service, which is part of Public Health England, collects information about every cancer patient in England. This is important to help understand cancer better, and to make sure that people living with cancer receive the best possible care and support. Cancer patients are given a separate choice to opt-out of having their data included in the Cancer registry, although very few do. If you do not opt-out of the cancer registry but do opt-out of the national data opt-out, the cancer registry will still be able to collect confidential patient information about you but it will not share it beyond the registry.
- National Congenital Anomalies and Rare Diseases Registration Service: This also has a separate opt-out. As with the cancer registry, data will not be shared from this registry if you have a national data opt-out.
What if I’ve already opted out?
If you have previously opted out of NHS Digital sharing your confidential patient information, you don’t need to do anything. You should receive a letter from NHS Digital by August 2018, explaining that they will transfer your opt-out to the new national data opt-out.
If you want to change your mind, you can update your choice by visiting the website: nhs.uk/your-nhs-data-matters, or by calling 0300 330 9412