Data Standards Activities

The Alliance is currently undertaking several activities to support the adoption of data standards in the UK health data ecosystem: 

OMOP Common Data Model: We are focusing on the Observational Medical Outcome Partnership Common Data Model (CDM). More information on our work on OMOP can be found here.  

Data Officers’ Group: This is an oversight group comprising named data officer representatives from all Alliance member organisations across the NHS, and equivalent bodies in the devolved nations, as well as HDR UK representatives. The Group’s meetings discuss data quality, data standards, metadata standards, data provenance, and ontology / terminology. Learn more from the previous the Data Officers’ Group meeting report. 

Diversity in Data workshop: The Alliance has identified the need to address concerns around quality of data and missing samples that can hinder the reliability of scientific insights. We are bringing communities together to discuss recommendations for improving completeness, consistency, and representativeness of routinely collected data. More information on previous workshops and recommendations can be found here. 

Our approach to data quality and standards is guided by the principles set out in the Alliance’s Data Standards White Paper. 

Previous work on data quality and standards 

During the first phase of the Alliance (2019-2023) we supported and enabled the Digital Innovation Hub (DIH) Programme by providing a first wave of quality and standards guidance for datasets generated by the Alliance and the Health Data Research Hubs and how these are discoverable through the Health Data Research Innovation Gateway (the ‘Gateway’). We have a fully operational offer for researchers and innovators through the Gateway, with datasets from the Alliance and Hubs discoverable. 

Main activities included: 

  • Consulting on the updated Principles for Data Standards Green Paper in April 2021 by gathering views from people we work with across HDR UK community. 
  • Developing papers on the international landscape of health data sharing initiatives, literature, and legislation of data standards. 
  • The development of Common Data Elements to display on the gateway and an alignment around a core set for HDR UK purposes to help improve alignment and interoperability of future data.