Understanding data in health and care

Information about you and your health is recorded when you receive health or social care to help with your care and treatment. This is what most people call your medical records. Each organisation you have contact with keeps its own records about you.

Demographic information is information that identifies you. This includes:

• your name, date of birth, address and contact details
• your NHS number, which makes sure your records are linked to you and you alone

Health and care information is information about your care and treatment. This includes:

• details of health conditions and illnesses
• medicines and other treatments
• records of contact you've had with doctors and other health and care workers

Confidential patient information is information that combines these two types of information.

There are lots of safeguards in place to keep your confidential patient information safe.

We often think of ‘the NHS’ as one organisation that looks after our health and care. But lots of different organisations make up the NHS. These include:

• GP surgeries
• hospitals
• clinics you visit for specialist appointments
• labs that provide results of tests, for example blood tests
• groups that organise and fund these types of care in your area – for example clinical commissioning groups

The NHS also works closely with organisations that provide, organise or fund other types of care, such as:

• care homes
• social care agencies providing care in your own home
• local authorities who organise and fund these types of care

Because there are lots of different organisations providing care, there are lots of different records of each patient. There is no one record that contains all the information about your health conditions and treatments.

Information about patients who are being cared for, and the care they get, needs to be shared between these organisations. It’s very important that health and care staff looking after you have the information they need, when they need it, to make good decisions about your care, and keep you in the best possible health.

This information is important to us as individuals – better use of health and care information gives us more control of our own health and care.

It’s also needed to plan and organise health and care, and is a great resource for researchers looking at new treatments and seeing which types of care are most effective.

As well as organisations that provide or organise health and care at a local level, there are organisations who run the health service at a national level. These include:

• the Department of Health and Social care (DHSC) – the government department responsible for running the NHS in England
• organisations that work with the DHSC to put their policies into practice – including Public Health England (PHE), NHS England, NHSX and us, NHS Digital

What we do

NHS Digital is the data and technology partner of the NHS in England. We make sure patient information is protected, and can be shared legally and used safely to improve health and care.

We:

• run and manage computer systems that link different parts of health and care together and give health and care professionals the information they need to give you the best possible care
• work to provide apps, websites and services to give you better control over your own health and care
• collect some specific health and care data to check how the health and care service is performing and to improve everyone's care

Improving your individual care

Some of your health information will be held in our systems to improve your care. For example:

• a central IT service called the NHS Spine links your records to your NHS number and makes sure this important information is never lost, wherever you are treated
• vital medical information including medicines you take and your allergies is recorded in your Summary Care Record, giving health professionals important and sometimes life-saving information when you are being treated away from your usual GP surgery
• you will be called for routine screenings, for example for cervical or bowel cancer, based on information we hold about you in our central systems

We provide services that help you manage your own health and care and make it easier to get the care you need. For example:

• the NHS website provides trusted medical information, helping you you take control of your health and wellbeing
• the NHS App provides a simple and secure way for people to access a range of NHS services on their smartphone or tablet, including booking appointments at your GP surgery
• your prescriptions can be sent direct to a pharmacy through our Electronic Prescription Service, saving you time and improving your care
• you can book a hospital or clinic appointment online at a time to suit you, using our e-Referrals Service

Improving care for everyone

We collect confidential patient information so that it can be used to improve everyone's health and care.

The information we collect is used to:

• run the health service
• manage epidemics
• plan for the future
• research health conditions, diseases and treatments

Evidence from the confidential patient information of millions of people like you helps people working in health and care make the best decisions for everyone. We always collect and store information about you securely and in line with the law.

NHS Digital is also known as the Health and Social Care Information Centre. We were set up by the Health and Social Care Act 2012. One of our specific legal responsibilities is to be the safe haven of health and care information.

The Secretary of State for Health and Social Care, and NHS England, can tell us to collect and process information on specific topics, or set up information systems to collect information. This means they can see, for example, whether policies are working or which treatments are most effective. These orders are called 'directions'. 

The Care Quality Commission (CQC), National Institute for Health and Care Excellence (NICE)  and NHS England (NHSE) can also tell us to collect information. These are called 'mandatory requests'.

Other health and care organisations and local authorities can also ask us to collect information for them, if they are legally allowed to view this information.

When we are told or asked to collect certain information it means it’s a legal requirement for health and care organisations to share it with us. We publish 'data provision notices', telling these organisations what we need to collect from them. All our data provision notices are published on our website.

We use confidential patient information within NHS Digital, and sometimes share it with other organisations so that they can use it to improve everyone's health and care. Most of the time, the information we use and share could not identify you as an individual. Wherever possible, we make sure that any details that could identify individual people have been removed, before we use data. We call this 'anonymised data'.

Some of the time, however, we allow the use of data that could potentially identify you, because it needs to be linked to your unique individual patient record. We call this 'identifiable data'.

Information that could potentially identify you is only used if it is:

• used to improve health and care
• looked after properly and kept safe
• allowed by law
• absolutely necessary - where anonymised data would not do the same job

There are very strict rules about who can access confidential patient information, how it must be protected, and what it can be used for. Before information is shared with other organisations, they must satisfy our Data Access Request Service that they will store it safely and legally, and they have a good reason for using it that will benefit health and care.

Information is never passed to marketing or insurance companies without consent. We publish all of our data releases on our data release register.