Abstract

The aim of this research was to investigate the extent of data linkage of children and young people’s data in Integrated Care Boards (ICBs) across England. The research questions were explored using a Freedom of Information (FOI) request submitted to all 42 ICBs in England. 31 of 42 ICBs responded to the FOI request (73.8%).

The ICBs reported that they were frequently engaging in data linkage between health datasets. Secondary Uses Services (SUS), Accident and Emergency (A&E), Primary care, and Community Services Datasets (CSDS) were the most frequently linked health datasets. However consistent with the authors’ previous publication on local authority (LA) data linkage practices, ICBs were rarely linking their health data with LA datasets (social care and education).

Primarily, if ICBs were linking data, they were doing so for all children and young people in their area. However, some suggested they could not specifically undertake data linkage for certain groups of children, such as those with Special Educational Needs and Disabilities (SEND) and Looked after children, because these vulnerabilities were not always flagged in their health datasets.

ICBs were most likely to be using linked data to undertake strategic planning and populate data dashboards. This echoes the findings from the publication on LA data linkage practices, however the ICBs were also often using the linked data for population health management.

This study suggests that ICBs, similar to LAs, frequently link internal datasets, but face greater challenges with regards to external data linkage. This barrier between healthcare data and LA data on social care and education is a hinderance to multi-agency efforts to meet the needs of disabled children and their families as mandated by the Children and Families Act. Recommendations informed by this research are presented at the end of this briefing.