Your Data - Why it Matters
Overview
The NHS wants to make sure you and your family have the best care now and in the future. Your health and adult social care information supports your individual care. It also helps us to research, plan and improve health and care services in England.
Unless you have chosen to opt out, your confidential patient information can be used for research and planning.
Your confidential patient information
Confidential patient information identifies you and says something about your health care or treatment. Information that only identifies you like your name and address is not confidential patient information.
Using your confidential patient information
Your confidential patient information is used in two different ways:
Your individual care
Health and care professionals may use your confidential patient information to help with your treatment and care. For example, when you visit your GP, they may access your records for important information about your health.
Research and planning
Confidential patient information is also used to:
- plan and improve health and care services.
- research and develop cures for serious illnesses.
Where you have a choice
If you don’t want your confidential patient information to be used for research and planning, you can opt out of this.
Manage your choice
You may use the NHS online service. if you do not wish to opt out, you don’t have to do anything at all.
Benefits of data sharing
Research
Prevent serious illness.
Develop new treatments.
Learn more about diseases.
Your confidential patient information provides numerous benefits. It is used in research to find cures and better treatments for diseases like diabetes and cancer.
With your data, we are better able to develop and improve health and care services for the future.
Planning
Plan NHS health services.
Make services safer.
Improving quality of care.
Confidential patient information can also be used to plan health and care services more effectively. The NHS and local authorities can plan where they need to provide further care services more efficiently.
This helps to improve health and social care for you and your family.
How your data is used
The NHS collects health and care data from all NHS organisations, trusts and local authorities. Data is also collected from private organisations, such as private hospitals providing NHS funded care. Research bodies and organisations can request access to this data.
More information on health and care records
Research bodies and organisations include:
- university researchers.
- hospital researchers.
- medical royal colleges.
- pharmaceutical companies researching new treatments.
Most of the time, anonymised data for research and planning is used. So your confidential patient information isn’t always needed. If you do opt out, data that does not identify you may still be used.
Who can’t use your data
There are very strict rules on how your data can and cannot be used, and you have clear data rights.
Access to confidential patient information will not be given for:
- marketing purposes.
- insurance purposes (unless you specifically request this).
How your data is protected
Protection of your confidential patient information is taken very seriously and is looked after in accordance with good practice and the law.
Every organisation that provides health and care services will take every step to:
- ensure data remains secure.
- use anonymised data whenever possible.
- use confidential patient information to benefit health and care.
- not use confidential patient information for marketing or insurance purposes (unless you specifically request this).
- make it clear why and how data is being used.
- respect your decision if you decide to opt out.
- only use information about you where allowed by the law.
All NHS organisations must provide information on the type of data they collect and how it is used.
Data release registers are published by NHS Digital and Public Health England, showing records of the data they have shared with other organisations.
NHS Digital Data Release Register
Public Health England data release register
Manage your choice
Use the service to request that your confidential patient information is not used beyond your own individual care.
If you decide to opt out, this will be respected and applied by NHS Digital and Public Health England. These organisations collect, process and release health and adult social care data on a national basis. Your decision will also be respected and applied by all other organisations that are responsible for health and care information by March 2020.
An opt-out will only apply to the health and care system in England. This does not apply to your health data where you have accessed health or care services outside of England, such as in Scotland and Wales.
If you choose to opt out, your data may still be used during some specific situations. For example, during an epidemic where there might be a risk to other people’s health.
More information on where opt-outs don't apply
Before you start
You must have an email address or phone number registered with an NHS service to continue online.
To continue you will need:
- to be aged 13 or over.
- access to your email or mobile phone.
- your NHS number or postcode registered with your GP.
Other ways to manage your choice
There are other ways to manage your choice if you are unable to use the online service or wish to set a choice on behalf of someone else.