Using your baby’s information in the National Neonatal Audit Programme
While your baby is in the neonatal unit, staff record information in an electronic record. They use this to care for your baby, and to help the health service run well. All neonatal units use electronic records. Partners outside the hospital use this information to improve neonatal services through audit and research; this includes the National Neonatal Audit Programme.
What is the National Neonatal Audit Programme?
The National Neonatal Audit Programme (NNAP) is run by the Royal College of Paediatrics and Child Health (RCPCH). We are commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England, the Scottish Government and the Welsh Government.
The National Neonatal Audit Programme helps neonatal units to improve the care they provide to babies who need specialist treatment. We use information about your baby’s care to help neonatal units in England, Scotland and Wales to improve the care and outcomes for other babies.
We look at whether babies receive consistent, high quality care, whether babies have recommended health checks to reduce the risk of complications and monitor how well babies are doing following this care.
What information does the National Neonatal Audit Programme use?
Neonatal unit staff enter your baby's information onto a secure electronic record system. All neonatal units share information from these electronic records with the National Neonatal Audit Programme (NNAP) project team within the RCPCH. This includes sensitive personal data, including NHS number (CHI number in Scotland), information about the care that mum and baby received and any related health conditions. The NNAP project team only uses the information for the purpose of the National Neonatal Audit Programme to monitor and try to improve standards of patient care.
Information is stored securely and used in accordance with the General Data Protection Regulations and other relevant legislation. The National Neonatal Audit Programme only conducts analysis of NNAP data once all identifiable information has been removed.
The Royal College of Paediatrics and Child Health and its partners feel it is in the best interests of babies and families to process this information to improve the care babies receive. Our partners include parents and parent representative organisations, such as Bliss, the charity which champions the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals, and enabling life-changing research.
What is the legal basis for processing patient data?
The NNAP has section 251 approval to collect patient identifiable data without explicit patient consent as its aims are considered to be in the public interest, as the audit will help improve standards of neonatal care. To find out more about section 251 approval, visit the Health Research Authority website.
Processing is permitted under the General Data Protection Regulation (GDPR) on the following legal bases:
- Article 6 (1) (e) processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. This is justified through commissioning arrangements which link back to NHS England and the Welsh Government.
- Article 9 (2) (i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy. This is justified as the NPDA aims to drive improvements in the quality and safety of care and to improve outcomes for patients.
The Royal College of Paediatrics and Child Health does not share any personal information or transfer any data outside of the United Kingdom and no individual babies are identified in any of our reports.
We also protect your privacy rights by providing you with the option to opt out.
How long are the data held for?
The NNAP team at the RCPCH acts as the data processor on behalf of the Healthcare Quality Improvement Partnership (HQIP), who are the data controllers for the NNAP data. The RCPCH will hold the NNAP data for as long as it is commissioned to deliver the NNAP project by HQIP. All data will be deleted or transferred back to HQIP within two weeks of the end of our contract. If HQIP commissions the RCPCH to deliver the NNAP under a new or extended contract, then the data will be retained for the period of the new contract.
Do you ask my permission to use my baby’s information?
Information about all babies admitted to an NHS neonatal unit is routinely included in the National Neonatal Audit Programme. It is important that we include information on every baby treated by a neonatal unit so that the National Neonatal Audit Programme is properly representative of neonatal care in the UK. Because of the large number of babies involved, it is impractical to seek consent from each family. You can choose to opt out of having your baby’s information submitted to the audit.
If you do not want your baby’s information to be used, please tell the staff on the neonatal unit where your baby is receiving care. They will make sure your baby’s information is not included in the National Neonatal Audit Programme. This will not affect your baby’s care in any way. For further information on how to opt out please contact email@example.com.
What are my rights?
Your trust or health board is the data controller of your baby’s record and only share non-identifiable data with us for the audit, so you will need to contact your neonatal unit directly if you wish to make a rights request. If we receive any requests, we can only forward these on if you provide us with the name of the trust or health board providing your baby’s care. We explain a bit more about your rights below:
Right of access: We can let you know which categories of data we collect but you will need to contact your unit directly for a copy of the information as we can’t identify individuals from the data we receive.
Right to erasure, right to rectification and right to object: We are unable to delete, amend or update any of your baby’s personal data as we are not data controllers of patient information and are unable to identify individuals from the dataset provided. The right to erasure also does not apply to an individual’s health record or where it is used for public interest purposes. However, you can opt out of your baby’s data being used for the audit by telling the staff on the neonatal unit where your baby is receiving care that you do not want your baby’s information to be included in the National Neonatal Audit Programme. The staff will then exclude your baby’s data from any submission.
Right to restriction (only store your personal data and undertake no further processing): This only applies in certain circumstances. Any requests for restriction of processing should be sent to your trust or health board and they will inform us where applicable.
Will I have access to the audit reports?
Yes, each year, the National Neonatal Audit Programme produces a parent and carer guide to the audit, called Your baby’s care. The guide is available in English and Welsh. We also produce a poster of results that neonatal units can display on the wall.
You can also view the full National Neonatal Audit Programme national annual report and information about each hospital on NNAP Online.
Who should I contact for more information?
To find out more about the audit and how your baby’s information is used, please talk to the staff in your neonatal unit. You can also contact the project team at firstname.lastname@example.org or visit our website. You can also contact the College’s Data Protection Officer if you have queries about how the college processes personal data: email@example.com
The Healthcare Quality Improvement Partnership (HQIP) is the data controller of the National Neonatal Audit Programme and can also be contacted if you have any questions about how your information is being used for the audit. Please direct any queries for the Healthcare Quality Improvement Partnership Data Protection Officer to firstname.lastname@example.org.
You do also have the right to lodge a complaint with the Information Commissioner’s Office (ICO) at email@example.com if you have concerns about the way your baby’s personal data are being handled.
Bliss is the UK charity working to ensure that every baby born premature or sick in the UK has the best chance of survival and quality of life. Bliss fully supports the NNAP. For more information about Bliss please visit www.bliss.org.uk.