Childhood health and education
A study at which focuses on quantifying the association between trajectories of type 1 diabetes (also known as child-onset diabetes) related health and trajectories of educational outcomes.
While a child's health may influence their educational outcomes, what happens in schools is likely to have an effect on health management. Furthermore, other factors such as families independently affect both education and health outcomes.
Unpicking and quantifying the importance of these different effects is a challenge that requires a multidisciplinary and collaborative approach to research.
Research
Diabetes and educational outcomes
Type 1 diabetes (also known as child-onset diabetes) is one of the most common chronic conditions affecting children in the UK. While the medical management of diabetes is well understood, the implications in schools for attendance, attainment and behaviour are rarely researched due to a lack of data.
This project seeks to link health and education datasets to quantify the associations between trajectories of type 1 diabetes related health and trajectories of educational outcomes. This project is funded by the Medical Research Council.
Data processing
This project involves linkage of a number of datasets. Though the datasets created use non-identifiable data, the process of linkage does require the sharing of identifiers with a trusted third party, NHS Wales Informatics Service (NWIS) in order to facilitate links across the different datasets.
We have approval for the flows of confidential patient information for linkage of health datasets from the Confidentiality Advisory Group, part of the Health Research Authority and the Research Ethics Committee. These health datasets are the National Diabetes Audit (NDA) held by NHS Digital and the National Paediatric Diabetes Audit (NPDA) held by the Royal College of Paediatrics and Child Health.
The school education data for pupils from Wales is already provided by Welsh Government routinely into SAIL where is it is available in pseudonymised format for linkage to the new datasets. Additional educational data will also be released from the Higher Educational Statistics Agency (HESA) dataset which contains information on all students in UK Higher Education.
Approval documentation
- Research Ethics Committee (REC) approval - December 2017
- Confidentiality Advisory Group (CAG) approval - February 2018
- Confidentiality Advisory Group (CAG) amendment - December 2018
- Confidentiality Advisory Group (CAG) amendment - April 2021
- Confidentiality Advisory Group (CAG) amendment - June 2021
Fair processing documentation
For those individuals who may be subjects in these datasets, information on how to opt-out and who to contact with queries is provided on the website of each data provider:
We have project specific fair processing documentation which covers all datasets used for the project.
We also provide dataset specific versions for posting on the data provider’s websites:
The personal cost of health conditions in childhood
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.
Visit the ADR project page to find out more.
Further information
ADR blog post outlining the project.
Type 1 diabetes and education: Patient workshop, April 2021 - read the report.
Projects
The personal cost of health conditions in childhood
Evidence on how children with chronic conditions such as diabetes, epilepsy, and asthma fare in spheres beyond health is limited, in part due to the challenges in combining administrative data.
To tackle this for diabetes we worked with the national paediatric and adult diabetes audits, together with HESA and Welsh Government, to flow and link these health and education datasets for Wales.
Find out more about this project
STEADFAST: Education outcomes in young people with diabetes: innovative involvement and governance to support public trust.
Approximately 40,000 children and young people live with diabetes in the UK (primarily type 1 diabetes) with prevalence increasing in young people. Poor long-term management leads to serious complications, which can significantly impact quality of life and NHS costs.
The four UK home nations each have a statutory commitment to support young people with medical conditions in their education, yet the evidence base to develop and evaluate interventions remains weak.
Find out more about this project
Investigating the inter-relationship between diabetes and children's educational achievement.
A child with diabetes will learn to self-manage their blood glucose. The quality of this management will have direct health implications which may impact educational outcomes (including attendance and achievement) which in turn may affect self-management and other health outcomes.
The overall aim of the research is to better understand the interface between health outcomes and educational outcomes for children with diabetes.
Find out more about this project
Development of a research-ready dataset linking data on children and young people in London held by Local Authorities and healthcare providers.
There are serious challenges facing social care, education and health services for children and young people in England. Beyond high profile cases of avoidable child deaths, the social costs of poor outcomes of children in the care system are estimated to be £23 billion per year.
From obesity to death rates, children's health outcomes are worse than in many comparable European countries. Many children have missed extended periods of school and fallen behind on learning during the Covid-19 pandemic.
Meet the team
Lead researcher
Academic staff
Policy and Parliamentary work
The project team have submitted evidence to the following UK and Welsh Government consultations and inquiries:
- The Children's Commissioner Family Review call for evidence (May 2022)
- Welsh Government - Children, Young People and Education Committee Inquiry into Pupil Absence (June 2022)
- Department for Education Special Educational Needs and Disabilities (SEND) Review: Right support, right place, right time (July 2022)
- Department for Education consultation 'Modernising school attendance and admission registers and setting national thresholds for legal intervention' (July 2022)
- Ofsted and Care Quality Commission consultation - 'A new approach to area SEND (Special Educational Needs and Disabilities) Inspections' (September 2022)
- Education Select Committee Inquiry on ‘Persistent absence and support for disadvantaged pupils' (February 2023)
- Welsh Senedd's Children, Young People and Education Committee Inquiry into ‘Do disabled children and young people have equal access to education and childcare?’ (September 2023)
For more information please contact: frenchr3@cardiff.ac.uk
Resources
Fair processing document
This fair processing document aims to inform research participants of how their information will be used fairly, legally and ethically.
If this document cannot be read by your assistive software, you can request an accessible version by emailing web@cardiff.ac.uk. Please include the assistive tools you use and the format you require.
REC approval letter
Steadfast protocol
Cardiff University response to The Children's Commissioner Family Review
Final response to the Children, Young People and Education Committee inquiry into Pupil Absence
REC approval letter
Steadfast protocol
Cardiff University response to The Children's Commissioner Family Review
Final response to the Children, Young People and Education Committee inquiry into Pupil Absence
Schools
Next steps
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