17 February 2021
ADR UK is funding the creation of an information governance framework for linking child disease-specific health datasets to school and university data for England and Wales.
The study involves the creation of a safe legal pathway for confidential patient information from child health datasets to be securely linked to other sources of data whilst preserving privacy. Once the data linkage process is completed, the data is de-identified before being made available to approved researchers in a secure environment for projects in the public interest.
The information governance framework will be tested with a sample data flow using national diabetes audit datasets. The linkage of other disease-specific datasets is beyond the timeframe of this project, though we hope to prepare the ground for datasets for other child health conditions, starting with the Epilepsy 12 Audit.
The project is led by Cardiff University in collaboration with Diabetes UK, the Royal College of Paediatric and Child Health (RCPCH), University College London and Imperial College London, in partnership with NHS Digital and the Department for Education (DfE), working with the Medical Research Council Regulatory Support Centre (MRC-RSC) and the Office for National Statistics (ONS).
The project involves establishing the information governance framework for linkage of several existing datasets:
- The National Paediatric Diabetes Audit (NPDA) records data from clinic appointments with paediatric diabetes units in England and Wales, and is held by RCPCH.
- The National Diabetes Audit (NDA) records data from adult review appointment in primary and secondary care for England and Wales, and is held by NHS Digital. Children must transition to adult services before age 24; typically, children transition aged 16.
- The National Pupil Database (NPD) is available for England (held by DfE) and Wales (held by Welsh Government) and records a wide range of information about students who attend schools and colleges in England and Wales.
- Further education data is stored as the Individualised Learner Record (ILR) for England and Lifelong learning Wales Record (LLWR) for Wales – these datasets record a more restricted set of information about students who attend further education institutions.
- The Higher Education Statistics Agency (HESA) dataset records a wide range of information about students who attend higher education institutions in the UK, we restrict our extract to England and Wales.
Figure: Age coverage for each of the linked datasets
The linked database will be de-identified: this means it will not contain any information that identifies an individual. For example, it will not include names, addresses, dates of birth, pupil, or NHS numbers.
The research database will be made available to external researchers via the Office for National Statistics (ONS) Secure Research Service. Researchers will need to be approved and submit a successful application to access the data.
What is the potential of this newly linked data?
The research database will facilitate research to improve policymaking for education and health tailored to specific health conditions. The disease-specific information provided by audits will facilitate deep exploration of the issues associated with each disease. Including datasets for multiple health conditions also allows us to explore how measures that are common across conditions such as ‘school absence due to poor health’ differ in their effects by disease type.
The database will help to address how disease-specific measures of health conditions are associated with school attendance, university participation, and educational outcomes. The richness of the data will allow researchers to adjust for health and educational factors, whilst the longitudinal nature of the database will help them unpick the extent to which health measures are related to subsequent educational outcomes and, conversely, how educational experiences are related to subsequent health outcomes.
Engaging the public
The project team is working with Diabetes UK to generate robust feedback from families of children with diabetes and the wider public. Since the project will be using sensitive data and complex methods to protect privacy, we are working with Dr Alex Bailey at the Medical Research Council’s Regulatory Support Centre to deliver training for the patient groups to ensure that the legal and practical implications of the information governance framework are well understood. These will help to inform our meetings with the Confidentiality Advisory Group (CAG) at the Human Research Authority (HRA), who are responsible for approving the research database framework.
Project lead:Dr Robert French, Cardiff University
Funding amount: £181,211.70
Duration: 1 February 2021 – 30 April 2021
This project is funded via the ADR UK Strategic Hub Fund, a dedicated fund for commissioning research using newly linked administrative data, in consultation with the Research Commissioning Board (RCB).