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YOUR DATA MATTERS

your care dataOverview – Choose if data from your health records is shared for research and planning - https://www.nhs.uk/your-nhs-data-matters/

Choose if data from your health records is shared for research and planning

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Overview – Choose if data from your health records is shared for research and planning - NHS

Your health records contain a type of data called confidential patient information. This data can be used to help with research and planning.

You can choose to stop your confidential patient information being used for research and planning. You can also make a choice for someone else like your children under the age of 13.

Your choice will only apply to the health and care system in England.

Overview – Choose if data from your health records is shared for research and planning - NHS

What is confidential patient information

Confidential patient information is when 2 types of information from your health records are joined together.

The 2 types of information are:

  • something that can identify you
  • something about your health care or treatment

For example, your name joined with what medicine you take.

Identifiable information on its own is used by health and care services to contact patients and this is not confidential patient information.

How we use your confidential patient information

Your individual care

Health and care staff may use your confidential patient information to help with your treatment and care. For example, when you visit your GP they may look at your records for important information about your health.

Research and planning

Confidential patient information might also be used to:

  • plan and improve health and care services
  • research and develop cures for serious illnesses

Your choice

You can stop your confidential patient information being used for research and planning. Find out how to make your choice.

If you’re happy with your confidential patient information being used for research and planning you do not need to do anything.

Any choice you make will not impact your individual care.

How confidential patient information is used - Choose if data from your health records is shared for research and planning - NHS

How confidential patient information is used Choose if data from your health records is shared for research and planning

The NHS collects confidential patient information from:

  • all NHS organisations, trusts and local authorities
  • private organisations, such as private hospitals providing NHS funded care

Research bodies and organisations can request access to this information. This includes:

  • university researchers
  • hospital researchers
  • medical royal colleges
  • pharmaceutical companies researching new treatments

Who cannot use confidential patient information

Access to confidential patient information will not be given for:

  • marketing purposes
  • insurance purposes

(unless you request this)

How confidential patient information is protected

Your confidential patient information is looked after in accordance with good practice and the law.

Every organisation that provides health and care services will take every step to:

  • keep data secure
  • use data that cannot identify you whenever possible
  • use data to benefit health and care
  • not use data for marketing or insurance purposes (unless you request this)
  • make it clear why and how data is being used

All NHS organisations must provide information on the type of data they collect and how it’s used. Data release registers are published by NHS Digital and Public Health England, showing records of the data they have shared with other organisations.

When your choice does not apply - Choose if data from your health records is shared for research and planning - NHS

When your choice does not apply

When your choice does not apply - Choose if data from your health records is shared for research and planning - NHS

If you choose to stop your confidential patient information being used for research and planning, your data might still be used in some situations.

When your choice does not apply - Choose if data from your health records is shared for research and planning - NHS

When your choice does not apply - Choose if data from your health records is shared for research and planning - NHS

When required by law

If there's a legal requirement to provide it, such as a court order.

When you have given consent

If you have given your consent, such as for a medical research study.

When there is an overriding public interest

In an emergency or in a situation when the safety of others is most important. For example, to help manage contagious diseases like meningitis and stop them spreading.

When information that can identify you is removed

Information about your health care or treatment might still be used in research and planning if the information that can identify you is removed first.

When there is a specific exclusion

Your confidential patient information can still be used in a small number of situations. For example, for official national statistics like a population census. Click here to read when you choice does not apply.

Make your choice - Choose if data from your health records is shared for research and planning - NHS

Make your choice Choose if data from your health records is shared for research and planning

Make your choice - Choose if data from your health records is shared for research and planning - NHS

Use this service to:

  • choose if your confidential patient information is used for research and planning
  • change or check your current choice
Make your choice - Choose if data from your health records is shared for research and planning - NHS

Your choice will be applied by:

  • NHS Digital and Public Health England
  • all other health and care organisations by March 2020

Any choice you make will not impact your individual care.

Make your choice - Choose if data from your health records is shared for research and planning - NHS

Before you start

You must:

  • be aged 13 or older
  • have access to your email or mobile phone
  • have your NHS number or your postcode registered with your GP surgery

Make your choice - Choose if data from your health records is shared for research and planning - NHS

An NHS number is a 10 digit number, like 485 777 3456.

You can find your NHS number by logging in to a GP online service or on any document sent to you by the NHS, such as your:

  • prescriptions
  • test results
  • hospital referral letters
  • appointment letters
  • Ask your GP surgery for help if you can't find your NHS number.

Make your choice - Choose if data from your health records is shared for research and planning - NHS




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