Information about you and the care you receive is shared, in a secure system, by healthcare staff to support your treatment and care.
It is important that we, the NHS, can use this information to plan and improve services for all patients.
What is the Care Data Programme?
We would like to link information from all the different places where you receive care, such as your GP, hospital and community service, to help us provide a full picture. This will allow us to compare the care you received in one area against the care you received in another, so we can see what has worked best.
Information such as your postcode and NHS number, but not your name, will be used to link your records in a secure system, so your identity is protected.
Information which does not reveal your identity can then be used by others, such as researchers and those planning health services, to make sure we provide the best care possible for everyone.
How your information is used and shared is controlled by law and strict rules are in place to protect your privacy.
We need to make sure that you know this is happening and the choices you have.
What are the benefits of sharing information?
Sharing information can help improve understanding, locally and nationally, of the most important health needs and the quality of the treatment and care provided by local health services. It may also help researchers by supporting studies that identify patterns in diseases, responses to different treatments and potential solutions.
Information will also help to:
- find more effective ways of preventing, treating and managing illnesses;
- guide local decisions about changes that are needed to respond to the needs of local patients;
- support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems;
- improve the public’s understanding of the outcomes of care, giving them confidence in health and care services; and
- guide decisions about how to manage NHS resources fairly so that they can best support the treatment and management of illness for the benefit of patients.
What will we do with the information?
We will only use the minimum amount of information we need to help us improve patient care and the services we provide.
We have developed a thorough process that must be followed before any information can be shared. We sometimes release information to approved researchers, if this is allowed under the strict rules in place to protect your privacy. We are very careful with the information and we follow strict rules about how it is stored and used.
We will make sure that the way we use information is in line with the law, national guidance and best practice. Reports that we publish will never identify a particular person.
Do I have a choice?
Yes. You have the right to prevent confidential information about you from being shared or used for any purpose other than providing your care, except in special circumstances. If you do not want information that identifies you to be shared outside your GP practice, ask your practice to make a note of this in your medical record. This will prevent your confidential information being used other than where necessary by law, (for example, if there is a public health emergency).
You will also be able to restrict the use of information held by other places you receive care, such as hospitals and community services. You should let your GP know if you want to restrict the use of this information.
Your choice will not affect the care you receive.
Do I need to do anything?
If you are happy for your information to be shared you do not need to do anything. There is no form to fill in and nothing to sign and you can change your mind at any time.
National data opt-out?
This is a facility that enables the public to register to opt out of their confidential patient information being used for purposes beyond their individual care and treatment. It was introduced for the health and social care system in England on 25 May 2018. The public can change their national data opt-out choice at any time via www.nhs.uk/your-nhs-data-matters, or by calling NHS Digital contact centre on 0300 3035678.
Where can I get more information?
You can visit the www.nhs.uk/caredata website for:
- Leaflets in other languages and formats are available from the website;
- For more information, including a list of frequently asked questions (FAQs),
You can also get further information from the website at www.hscic.gov.uk
You can also download the following documents from our website: