Your Data Matters to the NHS
Information about your health and care helps us to improve your individual care, speed up diagnosis, plan your local services and research new treatments. The NHS is committed to keeping patient information safe and always being clear about how it is used.
How your data is used
Information about your individual care such as treatment and diagnoses is collected about you whenever you use health and care services. It is also used to help us and other organisations for research and planning such as research into new treatments, deciding where to put GP clinics and planning for the number of doctors and nurses in your local hospital. It is only used in this way when there is a clear legal basis to use the information to help improve health and care for you, your family and future generations.
Wherever possible we try to use data that does not identify you, but sometimes it is necessary to use your confidential patient information.
You have a choice
You do not need to do anything if you are happy about how your information is used. If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service. You can change your mind about your choice at any time.
Will choosing this opt-out affect your care and treatment?
No, choosing to opt out will not affect how information is used to support your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer.
What do you need to do?
If you are happy for your confidential patient information to be used for research and planning, you do not need to do anything.
To find out more about the benefits of data sharing, how data is protected, or to make/change your opt-out choice visit your NHS data matters and manage your choice.
Useful Links / Downloads
Opt out of sharing your health records
FAQs
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.
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]
- No
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
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 the form 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.
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 your NHS data matters, or by calling 0300 330 9412
Is the national data opt-out UK-wide?
The national data opt-out applies to confidential patient information collected by the NHS in England only. Scotland has a separate opt-out, offered through Spire.
Where can I find out more?
NHS Digital national data opt-out programme
Other ways to manage your choice
Summary Care Records (SCR) – information for patients
Your Summary Care Record is a short summary of your GP medical records. It tells other health and care staff who care for you about the medicines you take and your allergies.
This will enable health and care professionals to have better medical information about you when they are treating you at the point of care. This change will apply for the duration of the coronavirus pandemic only. Unless alternative arrangements have been put in place before the end of the emergency period, this change will be reversed.
All patients registered with a GP have a Summary Care Record, unless they have chosen not to have one. The information held in your Summary Care Record gives health and care professionals, away from your usual GP practice, access to information to provide you with safer care, reduce the risk of prescribing errors and improve your patient experience.
Your Summary Care Record contains basic information about allergies and medications and any reactions that you have had to medication in the past.
Some patients, including many with long term health conditions, have previously agreed to have Additional Information shared as part of their Summary Care Record. This Additional Information includes information about significant medical history (past and present), reasons for medications, care plan information and immunisations.
During the coronavirus pandemic period, your Summary Care Record will automatically have Additional Information included from your GP record unless you have previously told the NHS that you did not want this information to be shared.
There will also be a temporary change to include COVID-19 specific codes in relation to suspected, confirmed, Shielded Patient List and other COVID-19 related information within the Additional Information.
By including this Additional Information in your SCR, health and care staff can give you better care if you need health care away from your usual GP practice:
- in an emergency
- when you’re on holiday
- when your surgery is closed
- at out-patient clinics
- when you visit a pharmacy
Additional Information is included on your SCR
In response to the coronavirus (COVID-19) pandemic we are temporarily removing the requirement to have explicit consent to share the SCR Additional Information. This change of requirement will be reviewed when the pandemic is over.
You can be reassured that if you have previously opted-out of having a Summary Care Record or have expressly declined to share the Additional Information in your Summary Care Record, your preference will continue to be respected and applied.
Additional Information will include extra information from your GP record, including:
- health problems like dementia or diabetes
- details of your carer
- your treatment preferences
- communication needs, for example if you have hearing difficulties or need an interpreter
This will help medical staff care for you properly, and respect your choices, when you need care away from your GP practice. This is because having more information on your SCR means they will have a better understanding of your needs and preferences.
When you are treated away from your usual doctor’s surgery, the health care staff there can’t see your GP medical records. Looking at your SCR can speed up your care and make sure you are given the right medicines and treatment.
The only people who might see your Summary Care Record are registered and regulated healthcare professionals, for example doctors, nurses, paramedics, pharmacists and staff working under their direct supervision. Your Summary Care record will only be accessed so a healthcare professional can give you individual care. Staff working for organisations that do not provide direct care are not able to view your Summary Care Record.
Before accessing a Summary Care Record healthcare staff will always ask your permission to view it, unless it is a medical emergency and you are unable to give permission.
Protecting your SCR information
Staff will ask your permission to view your SCR (except in an emergency where you are unconscious, for example) and only staff with the right levels of security clearance can access the system, so your information is secure. You can ask an organisation to show you a record of who has looked at your SCR – this is called a Subject Access Request.
Opting out
The purpose of SCR is to improve the care that you receive, however, if you don’t want to have an SCR you have the option to opt out. If this is your preference please inform your GP or fill in an SCR opt-out form and return it to your GP practice.
Regardless of your past decisions about your Summary Care Record consent preferences, you can change your mind at any time. You can choose any of the following options:
- To have a Summary Care Record with Additional Information shared. This means that any authorised, registered and regulated health and care professionals will be able to see a enriched Summary Care Record if they need to provide you with direct care.
- To have a Summary Care Record with core information only. This means that any authorised, registered and regulated health and care professionals will be able to see information about allergies and medications only in your Summary Care Record if they need to provide you with direct care.
- To opt-out of having a Summary Care Record altogether. This means that you do not want any information shared with other authorised, registered and regulated health and care professionals involved in your direct care, including in an emergency.
To make these changes, you should inform your GP practice or complete the SCR patient consent preferences form and return it to your GP practice.
