Exploring Regional Linked Data for Research Phase 1: Detection of vaccine-induced thrombotic thrombocytopenia with regional level data

There are no coordinated UK data feeds that provide detailed and near-real time information on hospital admissions or hospital activity to enable research across the UK. Currently, nationally available acute admissions data are only accessible after discharge, some with up to a 6-week time delay. The available data lack granularity. These gaps in the UK health data research ecosystem need to be addressed.

Health Data Research UK (HDRUK) convened a collaborative group (“The Regional Linked Health Data Group”) under the leadership of Luke Readman, Director of Digital Transformation for NHS London, to curate regional rapid near-real time hospital admissions data feeds from five local health systems across England and Scotland.

 Using identification of thrombotic adverse events associated with COVID-19 vaccination as a use case, the group identified a requirement for near-real time hospital admissions data feeds and curation of a data set across the five UK local health systems. This work led to insights into methods for scale up for different use cases. Challenges identified were variation the availability of similar data sources across local health systems, variable and complex governance processes, and the person-resources needed at Trust and Integrated Care System (ICS) level to implement these data feeds within current infrastructure.