This page tells you why your data is being collected, what we are using it for and how we keep it safe and secure.
Information about collecting data about your diabetes care
- Why is the NPDA collecting your data?
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The governments of England, Wales, and Jersey want to make diabetes care better so that all children and young people with diabetes live well with the condition. To see how well clinics in England, Wales and Jersey are supporting children and young people with diabetes, they have funded a charity called the Healthcare Quality Improvement Partnership (HQIP) to manage the National Paediatric Diabetes Audit (NPDA).
HQIP have put the Royal College of Child and Paediatric Health (RCPCH) in charge of running NPDA.
We collect data from all clinics for children and young people with diabetes in England, Wales and Jersey every year. We do this to check progress towards better care and to help clinics work out where they are doing well, and where they could do better. You can see the full set of data we collect about each child or young person's care (select 'NPDA core dataset' - updated in February 2024).
This helps to support better care, better health for children and young people with diabetes, and better experiences for you and your family when you go to clinic.
- Why are we allowed to collect your data?
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In the UK your personal data is protected by a law called GDPR. Under this law, anyone collecting your data needs to tell you all the reasons why they are doing so. This is called the legal basis. To collect health data, we also need a special reason. This is called ‘conditions for processing special category data’.
Our legal basis is Public Task and our condition for processing is Substantial Public Interest. These both mean that we are using your data to help all children and young people with diabetes in England, Wales and Jersey.
Usually, we would need consent from a person to collect their healthcare data, but it would be very hard to get consent from every child or young person included in the audit. Because of this, and because our work helps to improve your care, we have special permission from the Confidentiality Advisory Group to collect your data. This is called 'Section 251 approval.' To get this approval we have to show a good reason to collect the data, that we will store it very securely, and that only people who need to will see it.
- Do we share your data with anyone else?
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Sometimes, researchers working at universities ask for copies of the data we collect so they can see if they can find ways to improve care. We are only allowed to share this data with researchers who will hold it securely and who are trying to improve diabetes care.
When we share data with researchers we don't give them your personal data (eg NHS number or date of birth), unless they also have Section 251 approval and can show that they need identifiable data. We will only share your data with researchers if we agree with their research, if we have the data they need, and if it is not something we are already looking at. If you live in England and choose not to share your data by using the National Data Opt-Out, we will not give it to researchers.
NHS England uses NPDA data to link with data from adult diabetes clinics, so they can look at the care given to older teens and young adults. NHS England also uses our data to keep track of clinics prescribing hybrid closed loop systems (AKA artificial pancreases) so they can pay them back the money they spend on this treatment.
- How long do we keep your data for?
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We will keep your data for the whole time that we run the NPDA, as it is part of our contract. All data will be deleted or given back to HQIP very quickly after the RCPCH stops running the audit.
Our current contract lasts until April 2027.
- How can you stop your data being used?
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If you live in England, you may have asked for your health data to not be shared, through the National Data Opt-Out. This does not apply to the NPDA, so your data may still be shared with the NPDA.
No matter where you live, you can ask your diabetes clinic not to send your data to the NPDA. You can also contact the NPDA team at npda@rcpch.ac.uk.
If you live in Jersey, you can also email the clinical audit team at HSSClinicalAuditDepartment@health.gov.je
How to contact us
If you would like further information about the NPDA, including how to make a complaint, please contact npda@rcpch.ac.uk or call us on 020 7092 6167.
Last updated 16 June 2025