National Institute for Health Research Health Informatics Collaborative (NIHR HIC): Development of a Pipeline to Collate Electronic Clinical Data for Viral Hepatitis Research
Smith DA., Wang T., Freeman O., Crichton C., Salih H., Matthews PC., Davies J., Varnai K., Woods K., Jones C., Shaw AT., Glampson B., Mercuri L., Mulla A., Drumright L., Romao L., Ramlakan D., Higgins F., Weir A., Nastouli E., Agarwal K., Gelson W., Cooke GS., Barnes E.
<jats:p>The National Institute of Health Research (NIHR) Health Informatics Collaborative (HIC) is a programme of infrastructure development across NIHR Biomedical Research Centres (BRCs) in the UK. The aim of the NIHR HIC is to improve the quality and availability of routinely collected clinical data for collaborative, cross-centre research. This is demonstrated through research collaborations in selected therapeutic areas, one of which is viral hepatitis. The collaboration in viral hepatitis identified a rich set of data fields, including information on clinical assessment, antiviral treatment, laboratory test results, and health outcomes. Clinical data from different centres were standardised and combined to produce a research-ready dataset; this was used to generate insights regarding disease prevalence and treatment response. A comprehensive database and governance framework has been developed for potential viral hepatitis research interests, with a corresponding data dictionary for researchers across the centres. Data for an initial cohort of 960 patients with chronic hepatitis B virus (HBV) infections and 1404 patients with chronic hepatitis C virus (HCV) infections has been collected. For the first time, large prospective cohorts are being formed within NHS secondary care services that will allow research questions to be rapidly addressed using real world data. Interactions with industry partners will help to shape future research and will inform patient-stratified clinical practice. An emphasis on NHS-wide systems interoperability, and the increased utilisation of structured and unstructured data solutions for electronic patient records, is improving access to data for research, service improvement and the reduction of clinical data gaps.</jats:p>