How we use your data

How we use your data

Patient data is any information about a person’s physical or mental health: in the past, at present or in the future. 

Where does patient data come from?

When you visit your doctor or nurse, they write down things about your health.

Example: If you go to the doctor because you have a cough, the doctor might write, “Azara has a cough and a sore throat.”

If you go to hospital, the doctors, nurses and other specialists (for example dentists, physiotherapists and psychologists) will also write notes about you.

Patient data can also come from machines or tests. 

Example: If you have a blood test, the results (like how much iron is in your blood) are health data. If you use a thermometer to check your temperature, that number is health data too.

Where is patient data kept?

Patient data is saved on computers in hospitals and doctor’s offices. Sometimes it’s written in your medical notes.

Patient data saves lives: The bigger picture

This video from Understanding Patient Data introduces patient data, how data is used and why, what safeguards are, and how decisions are made.

Summary of this section

  • Your data is collected to help you get the best care.
  • Only people involved in your care can see your personal information.
  • Data used for planning or research is usually anonymised.
  • You have rights over your data, including seeing your records and opting out of some uses.
  • The NHS works hard to keep your data safe and private.

Why we use patient data

There is a lot we can do with the information in patient records. This data is very important because it helps doctors and nurses look after you better. It also helps the NHS make health and care services better for everyone.

Using data for direct care

We use data for direct care so doctors, nurses, and other health workers have the right information to help you. This means they can see things like your medical history, test results, allergies, and what medicines you take. With this information, they can:

  • Make sure you get the right treatment and medicines.
  • Avoid mistakes, like giving you something you’re allergic to.
  • Help you faster, because they don’t have to ask you the same questions every time.
  • Work together as a team, even if you see different people.

Only people who are looking after you are allowed to see your data, and there are rules to keep your information safe.

Example: Using health data to care for you

Sam feels unwell and goes to see their doctor.  The doctor looks at Sam’s health data, like: Past illnesses, Medicines, Test results.  This helps the doctor understand what is wrong.  The doctor gives Sam the right treatment.

Later, Sam goes to hospital.  The nurses and doctors can see the same information.

This means:

  • Sam does not have to explain everything again
  • The staff can help Sam quickly
  • Care is safer and better

Only the people caring for Sam can see this information. The data is used to help Sam get the best care.

Using data to improve health, care and NHS services

We use data to help the NHS and care services work better for everyone. By looking at information from lots of people, the NHS can:

  • Find out what’s working and what’s not: For example, if lots of people are getting better after a certain treatment, doctors know it’s a good one to use.
  • Spot problems early: If data shows more people are getting sick in one area, the NHS can send help or make changes to stop it getting worse.
  • Plan for the future: By knowing how many people need help, the NHS can make sure there are enough doctors, nurses, and medicines.
  • Make care safer: If data shows a medicine is causing problems, the NHS can warn doctors and patients.
  • Help with research: Data helps scientists find new ways to treat or prevent illnesses.
  • Make things fairer: By looking at data, the NHS can see if some groups of people aren’t getting the care they need and try to fix this.

All this helps the NHS use its money and resources wisely, so everyone gets the best care possible.

If your data is used to help plan NHS services or for research, your name and details that could identify you are usually removed. This means no one knows it’s your data.. 

Example: Using health data to improve NHS services

Lots of people visit their GP because of back pain.  Information from these visits is collected. This includes: Symptoms, Treatments, Test results

People’s names and details are removed.  This means no one knows who the data belongs to.  The NHS looks at this information and sees that many people are waiting a long time for help.

Because of this, the NHS:

  • Plans more back‑pain clinics
  • Makes sure the right staff are available
  • Helps people get treatment sooner

This helps services work better for everyone.  Your data helps improve care now and in the future.

Your rights and choices

There are strict rules and laws to keep your information safe and private. Only people who really need to see your data for their job are allowed to look at it.

You have the right to know how your data is used, to see your own records, and to ask questions or raise concerns. You can also choose to opt out of your data being used for research and planning if you wish. 

The NHS works hard to keep your data safe and private. If you have questions or worries, you can always ask.

Our legal duty, your rights and choices

This information explains how your data is used, your rights, and how to opt out if you want to.

The NHS uses your health information to:

  • Give you safe, effective care
  • Plan better services for everyone
  • Help researchers find new treatments
  • You have a choice about how your health data is used.

Why share data?

  • Better care: health and care professionals know your history and can treat you safely.
  • Faster help: no need to repeat your health story.
  • Improved NHS: data helps plan for enough staff, medicines, and equipment.
  • Fairness: the NHS can spot if some groups need more help.

Your rights

  • You can opt out of your data being used for research and planning.
  • You can opt back in at any time.
  • You have the right to know how your data is used.
  • You can ask to see, correct, or move your data.

Types of opt-out

You can choose whether your health information is used for research and planning.

There are two types of opt out:

GP Data Opt-Out - Ask your GP

This stops your GP surgery from sharing your confidential information for research and planning.

  • It does not affect day-day care
  • It only covers GP-held data

National Data Opt-Out - Use the NHS App or website

This stops the NHS from using or sharing your confidential information for research and planning across England.

  • It does not affect your care
  • It covers most NHS organisations

Opting out does not affect your day to day care. Your data will still be used to treat you safely.

When opt-out doesn’t apply

  • Direct care: health and care professionals need your info to treat you.
  • If you give consent: you can agree to take part in research.
  • Public health emergencies: like outbreaks or risks to others.
  • Required by law: court orders or safeguarding.

How to opt-out or back in

  • Talk to your GP practice
  • Visit the NHS App or NHS England website
  • You can change your mind anytime

If you opt out

  • You will still get safe NHS care
  • Your medicines and allergies will still be shared with healthcare staff
  • You may not be invited to take part in research or clinical trials
  • Some improvements to NHS services may not include your data

If you do nothing

  • Your data may be used to improve NHS services and support research
  • Your identity will be protected

Further information