The personal cost of health conditions in childhood

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This page is also available in Welsh.

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 it is hoped the ground will be prepared 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 dataset

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 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. It will help to address how disease-specific measures of health conditions might affect school attendance, university participation and educational outcomes.

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 exploration of how measures that are common across conditions such as ‘school absence due to poor health’ differ in their effects by disease type. In addition, the longitudinal nature of the database will help researchers 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. The findings of the engagement will help inform our meetings with the Confidentiality Advisory Group (CAG) at the Human Research Authority (HRA), who are responsible for approving the research database framework.

Find out more about the team’s engagement work and its findings.

Project details

Project lead:  Dr Robert French, Cardiff University

Funding amount: £184,342

Duration: 1 February 2021 – 30 April 2022

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 former Research Commissioning Board (RCB).

Categories: Data linkage programmes, ADR England, ADR Wales, Office for National Statistics, Children & young people, Health & wellbeing

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