Understanding the epidemiology, experiences and variation in the transition from neonatal to paediatric care: a mixed methods study

Information you need to know

The Department of Population Health Sciences is part of the University of Leicester. The University of Leicester is the Data Controller for your information.

The Data Protection Officer is:

• Parmjit Singh Gill
• University Of Leicester, University Road, Leicester, LE1 7RH
• +44 (0)116 229 7960
• dpo@leicester.ac.uk

This privacy notice explains how we use your personal information and your rights regarding that information.

Why are we collecting your data?

Every year approximately 60,000 babies are admitted for neonatal care in England. The reasons for admission are varied, ranging from extreme prematurity to specific health conditions such as jaundice. For the children who survive their time in neonatal care, the effects can be lifelong. This project will investigate the transition from neonatal to paediatric care, and how we can effectively support babies, children and families. This study is a mixed methods study – ‘Understanding the epidemiology, experiences and variation in the transition from neonatal to paediatric care: a mixed methods study’ - comprised of three workstreams. Briefly the aims of each are as follows:

1. To research the characteristics of children who receive care in the neonatal unit and subsequently in paediatric care
2. To investigate the differing approaches in practice around the time of discharge from the neonatal unit
3. To consider how we can support parents who have had a child in the neonatal unit and in the paediatric intensive care unit

What information are we collecting?

The information we are collecting for each workstream is as follows:

Workstream 1

No data is being collected specifically for this part of the study. We will use routinely collected data from the National Neonatal Research Database (NNRD); Paediatric Intensive Care Audit Network (PICANet); Hospital Episodes Statistics (HES); Patient Episode Database for Wales (PEDW) and Office for National Statistics (ONS). Data will be provided about the characteristics of babies/children and the care they receive whilst in hospital settings. The University of Leicester will not receive any information that identifies individual babies or children. Data is being provided by the NNRD and PICANet to NHS Digital/NHS Wales Informatics Service who will link the data sources together and add in additional information from HES, PEDW and ONS. In summary we are collecting no new information

Workstream 2

Data will be collected via a survey with healthcare professionals about neonatal unit practices and policies around discharge from neonatal care. For example, we will explore whether units have neonatal outreach teams; whether babies are discharged home receiving oxygen and whether parents receive training before discharge. We will ask participants to provide their email address and name of their neonatal unit although this will be optional. Following the survey we will select healthcare professionals to interview about their organisation’s approach to discharging babies from neonatal care. Healthcare professionals are being recruited via professional bodies (e.g. the British Association of Perinatal Medicine) and social media. In summary under this workstream we are asking information about your neonatal unit’s approach to discharge babies home and the support they receive before and after discharge.

Workstream 3

Data will be collected via interviews with parents who have had a child experience both neonatal care and paediatric intensive care. We will ask them to tell us about the experiences of being in neonatal care; of discharge from neonatal care; of realising their child was sick and needed hospital care again and of their experiences in paediatric care. We are recruiting parents via Bliss (baby charity); The Smallest Things (baby charity) and social media. The charities will provide support to parents if required. Interviews are being conducted over Microsoft Teams and will be recorded and transcribed by the research team. If anything identifiable is said during the interview it will not be transcribed in a non-identifiable way (e.g. name of hospital will be replaced with “Hospital A”). After transcription the audio recording will be destroyed. In summary under this workstream we are asking about the experiences of parents who have had a sick child in hospital.

How we will use this data?

We will use the data collected in this research to answer our research questions and to identify ways to improve the care provided to babies, children and their families. We will publish peer-reviewed articles in scientific journals and present our work at scientific conferences and meetings. We will also provide information to parents and families about all of our research, for example by publicising on social media or via magazines or podcasts. No one will be identified in any published research.

What is the legal basis for processing the data?

The legal basis we will use to process your personal information for research activity is Article 6 1. (e) of the UK GDPR “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 privacy notice will be periodically updated.

If we are sharing your data with others who are we sharing it with?

Only members of the research team at Leicester will have access to the data we receive and to your data. We will not be sharing the data collected as part of this study with any organisation outside of the University of Leicester. We will publish aggregated versions of the data collected in research publications. No one will be able to identify you from these publications, nor will they know that you took part in the study. 

How long we will process your data for?

All analysis in this study is due to end by 30/4/2024. We will retain the data from this study for ten years beyond the end of the study (31/12/2034) to allow us to complete publishing all findings and to respond to any queries about our work. 

What are your rights and how to enforce them?

For Workstream 1, The University will not have access to identifiable data about you or your child. If you would like to access, amend, erase or opt out of your personal data being used for research purposes, you must contact the PICANet or NNRD teams directly. For hospital data you must contact NHS Digital or the NHS Wales Informatics Service.

For workstream 2, you will be asked to provide information about your organisation’s working practices. Any personal information (e.g. email address) will be entirely voluntary to provide. Although, if you decide to provide your email address or other contact details you have the right to request rectification or erasure of your personal information being used. 

For workstream 3, you will be asked to read a participant information leaflet and complete a consent form before participating in the study. You are able to withdraw your consent at any time before and during the interview. After the interview has been transcribed and recording destroyed, it will not be possible to withdraw consent. 

Across all Workstreams of this research project, you will have the right to be informed, right to access and right to rectify any identifiable personal data about you or your child. 

Who can I contact for additional information?

For further information about this study please contact the principal investigator Dr Sarah E Seaton (sarah.seaton@leicester.ac.uk). If you have any concerns about how your data has been processed please contact the University’s Data Protection Officer Parmjit Singh Gill by email at dpo@leicester.ac.uk.

How to complain to the Information Commissioner’s Office?

Anyone can raise concerns with the Information Commissioner who can be contacted by:

• Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK95AF
• +44 (0)303 123 1113
• ICO website