Guidance

National population screening programmes: the information we use and why, and your options

Updated 19 June 2026

Applies to England

1. Why we use your personal information

NHS England and local screening services use personal information from medical records to invite you or your child for screening.

Screening helps find health problems early, before someone feels unwell.

We also use personal information to:

• check that screening services are safe
• make sure people are invited at the right time
• understand how well screening programmes are working
• find ways to improve them

Everyone should get the same high-quality screening service wherever they live. This is why, in addition to your local screening clinical services, NHS England runs a dedicated Screening Quality Assurance Service (SQAS) team, made up of quality assurance staff and health professionals working to make everyone’s screening journey the best it can be.

The role of the NHS SQAS team is to measure the quality of the screening service to ensure that it is effective and maintaining a high quality. To do this our quality assurance service teams:

• bring together and review information from across the screening service to see what’s working well, and where we can offer support to improve things
• visit local screening sites to see if they are meeting our high-quality standards
• investigate any issues we find during our reviews and visits or are reported to SQAS, to understand and address problems with how the service is running

Most of the time, we use information in a way that does not show who you are.

Your personal information is protected by law. This law gives you rights over how your personal information is used.

2. Who is responsible for your personal information

Local screening services and NHS England are responsible for looking after your personal information.

This means they must:

• keep it safe
• only use it for the right reasons
• follow the law

NHS England is responsible for personal information used to:

• run screening programmes
• check they are safe and working properly
• look at numbers and patterns to improve services

3. What information is used to invite people for screening

If you or your child are eligible for a screening programme, we use some personal information to send invitations and reminders.

This can include:

• name
• date of birth
• sex
• NHS number
• ethnicity
• address, phone number or email
• some health information, if it is needed for screening

This information usually comes from NHS records such as GP or hospital systems.  If you use the NHS App, you may get screening invitations or results through the App. Local screening services may also send reminder messages. You can ask them to stop at any time.

Sometimes, screening services need a bit more personal information to help people get the right care. For example, if someone has a disability, staff may need to allow more time in an appointment. Only information that is needed for screening is shared.

4. Your choices

Screening is your choice. You can:

• choose to take part in screening
• choose not to take part
• opt out of invitations and opt back in later

If you take part in screening, information about you will still be used to make sure services are safe and working properly. This helps everyone who is screened.

Opting out is specific to each screening programme. This means you can opt out of one programme and still be invited for another programme if you become eligible. You can opt back in later if you change your mind.

You can choose not to have your information used for research. This is explained later in the document.

5. Keeping your personal information safe

We take keeping your personal information safe very seriously.

Your information is:

• stored on secure computer systems
• only seen by trained staff who are allowed to use it
• always held securely

We will never:

• sell or rent your personal information
• use it for advertising or marketing purposes

6. Using information to make sure screening is safe and works well

NHS England uses information to:  

• check people are invited correctly
• see how well screening services are working
• look into problems if something goes wrong

Most of the time, we use information that:

• has names removed, or
• is grouped together with lots of other people’s information

Sometimes, we may need to use information that shows who someone is, to understand what happened and fix a problem.

We never publish information that could identify you or your child.

7. Using information to learn and improve services

NHS England looks at screening information to:

• understand how many people are taking part
• see where services could be improved
• help reduce health inequalities
• plan better services in the future
• design and evaluate pilot projects.

For this work, we use information that does not directly identify people.

Sometimes we may need to use information that identifies someone (for example, to check that everyone was followed up properly and to make sure no one was missed). Access is limited to trained staff, and we do not publish anything that could identify you.

We may also ask people if they would like to help by giving feedback or taking part in user research. This is always optional.

8. Testing new computer systems

NHS England sometimes builds new computer systems to improve screening services. Before these systems are used for real, they must be tested. To do this:

• we may use information already held by the NHS
• access is limited to a small number of trained staff
• information is deleted when testing is finished

Most of the data will not identify individuals, but where we need to use personal information, it will be treated confidentially.

9. Using your information for research

Sometimes, you or your child’s personal information from screening programmes is used for research.

Research helps doctors and scientists learn how to:

• improve screening
• improve treatments
• help people stay healthy

This only happens when:

• the research is approved by experts, and
• special legal permission is given

You can choose not to have your information used for research if you want. You can find out more or register your choice to opt out of your data being used for research purposes.

10. National health registers

Some information from screening programmes is shared with national health registers.

These registers help the NHS:

• understand how common certain illnesses are
• see how well screening programmes are working
• improve care for future patients

You can choose not to be included in these registers. Opting out of disease registration - NDRS

11. How long information is kept

How long information is kept depends on the screening programme. Usually, information is kept:

• while someone is eligible for screening, and
• for some time afterwards, in case we need to contact people if a problem with the screening is found later

If you opt out of screening, your information is still kept but will not be used to send invitations unless you opt back in.

12. The law and your personal information

The law allows the NHS to use personal information:

• to invite people for screening
• to keep screening services safe and effective

You can find out more here.

In some cases, we will have a legal obligation to use your information for a particular purpose. For example, when we are directed by the Secretary of State for Health and Social Care.

13. Your rights and getting help

You have rights over your personal information.

These include the right to:

• ask what information the NHS holds about you
• ask for a copy

If you want to access your screening results, contact your GP or local screening service. If you are a parent and would like to see your child’s results, please contact your midwife or health visitor.

To find out more about how your information is used, you can visit the NHS England Privacy Notice. This explains your rights and how to make a request.

If you are worried about how your information is used, you can contact NHS England or the Information Commissioner’s Office.