The personal cost of health conditions in childhood: A new approach using disease-specific datasets

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I am part of a group of researchers with a specific interest in type 1 diabetes, also known as childhood onset diabetes. As you might expect, a lot of research on diabetes is focused on health specific exposures and outcomes, for example monitoring blood glucose to predict time to first retinopathy.

Often, we would like to consider relevant variables beyond health such as characteristics of the child (e.g. levels of maturity) and family (e.g. levels of parental support). One way to do this is to speak to children and their families. However, when we are looking to represent a broad range of individuals, including those who might not have time or inclination to take part in a survey, we can use administrative datasets where some of these important characteristics are recorded to represent larger groups of individuals.

We are privileged in the UK to hold mature and high-quality administrative datasets on health, education, and many other areas. For many years, data providers have made datasets available for research in a ‘de-identified’ format, where the de-identification process strips away any personal identifiers (such as NHS number or name) or aspects of the data that make a person unique and therefore traceable.

However, linking data from different data providers requires a process to use identifiable information to facilitate linkage at the same time as respecting the legal protections of a person’s privacy. This becomes even more challenging when considering the linkage across disciplines, since there is a different legal basis surrounding health data to that for education data.

Developing an information governance framework for data linkage

Our project will create a legal framework (based on ‘Section 251’ of the 2006 National Health Service Act) for the use of confidential patient information from child health datasets to allow linkage to education datasets for England and Wales. This framework is based on approval from the Confidentiality Advisory Group (CAG) at the Human Research Authority (HRA). We will work directly with Diabetes UK and the Medical Research Council’s Regulatory Support Centre to educate and gather feedback from patients, their families and the wider public.

Once the legal framework has been approved, we will use a test-case linkage of the diabetes audits to school and university data for England and Wales. This dataset will be made available to researchers in the Office for National Statistics (ONS) Secure Research Service, and will provide novel scope for modelling the associations between diabetes-related health and educational measures.  

Though beyond the scope of the first phase of the project, researchers will also be able to use the legal framework to add further health datasets to the research database. We will work with data providers and researchers to set up these flows, starting with the Epilepsy 12 Audit.

Find out more about 'The personal cost of health conditions in childhood' project.

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