Message from NHS England — care.data Programme
In some circumstances, healthcare staff share information about your treatment and care to help us to improve the services we offer and the care we provide to everyone. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.
In order to plan and improve care for all patients it is important that we link information from the different places where you receive care to help us provide a full picture. This will let us compare the care received in one area to the care received in another, so we can see what worked best.
Your postcode or NHS number, rather than 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 services, to make sure we provide the best care possible for everyone.
We need to make sure that you know this is happening and the choices you have.
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 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 ask for 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 are very careful with the information and 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 and meets the NHS confidentiality code of practice, the NHS Constitution and other national guidance and best practice.
Reports that we publish will never identify a particular person.
Do I have a choice?
Yes. If you do not want information that identifies you from being shared outside your GP practice, tell 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 from.
This will not affect the care you receive.
Do I need to do anything?
If you are happy for your information to be shared to help improve services, 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.
If you would like to opt out then please complete a data sharing consent form. These forms are available at reception or you can download a Data Sharing Consent Form (PDF, 220kb).
Will anyone contact me?
We sometimes release information to approved researchers where this is allowed under strict conditions. For most research, patients do not need to be contacted, but in some cases they do. If a researcher needs to contact you, they will only do this with the approval of your own doctor, who will contact you for your permission.
Where can I get more information?
For more information about how data is collected and shared, including confidentiality, download the FAQ for patients (PDF, 153kb)
A patient information leaflet is also available for you to download How information about you helps us to provide better care (PDF, 344kb)
NHS England and NHS.uk websites both have more information regarding data sharing.