NHS care.data programme
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. 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
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;
- 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.
Where will the information be kept?
The information will be kept at the Health and Social Care Information Centre (HSCIC); a public body based in Leeds. The HSCIC is the central source of health and social care information in England. The role of the HSCIC is to ensure that high quality data are used appropriately to improve patient care. The HSCIC has legal powers to collect and analyse data from all providers of NHS care. The HSCIC is committed, and legally bound, to the very highest standards of privacy and confidentiality to ensure that your confidential information is protected at all times. Access to information is strictly controlled. Further information about the HSCIC is available at the HSCIC website
What information will be collected?
They are comprised of four blocks of data, namely:
- Demographic information
- Clinical information
This will include details relating to long term conditions such as diabetes, heart disease, cancer or mental illness. It will also include items such as blood pressure readings, test results and general health information (e.g. smoking status and alcohol consumption)
- NHS Prescriptions
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 (for example, if there is a legal requirement or if there is a public health emergency).
You have two options when restricting the use of confidential information about you, as part of the care.data programme:
1. Restriction 1 - you do not want any personal confidential data to be shared with the HSCIC from the GP record
2. Restriction 2 - you will allow the GP practice to share personal confidential data with the HSCIC, but do not want your personal confidential data to be disclosed to other organisations by the HSCIC
Please note that should you opt-out, data will be used and made available in aggregate and/or non-identifiable form
Your choice will not affect the care you receive
Do I need to do anything?
You do not need to 'Opt-in' to the care.data programme; if you are happy for your information to be shared you do not need to do anything.
If you do not want your information to be shared (Restriction 1), would like information to be shared by the Practice but not by the HSCIC (Restriction 2), or opt back in to the care.data programme if you have previously opted-out, please complete and return the NHS care.data programme consent form, which is available form the surgery.