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HDR UK — Health Data Research UK

Overview

Health Data Research UK (HDR UK) is the UK’s national institute for health data science, established in 2018 and funded by a consortium of UK public funders including UKRI, the Department of Health and Social Care, Wellcome Trust, British Heart Foundation, and Cancer Research UK. It accelerates the trustworthy use of health data for research and innovation by linking UK universities, NHS organisations, and national health data resources into a coherent research infrastructure.

Key Programmes and Infrastructure

HDRUK Gateway

The HDR UK Innovation Gateway is a national data catalogue providing a unified discovery layer for UK health datasets, including NHS electronic health records, biobanks, cohort studies, and clinical trial data. Datasets are described with standardised metadata aligned with DCAT and FAIR principles. The Gateway supports discovery of 650+ datasets held by 60+ data custodians, and is used by over 1,000 researchers with tens of thousands of monthly searches. It serves as the single front door for research access to the NHS Research Secure Data Environment Network.

BHF Data Science Centre

A joint initiative of HDR UK and the British Heart Foundation, providing cardiovascular and broader cardiometabolic data science infrastructure across the NHS. Relevant to neurodegeneration research with vascular components.

UK Health Data Research Alliance

HDR UK coordinates the UK Health Data Research Alliance, a network of NHS organisations, research institutes, and charities committed to FAIR health data sharing. Members include UK DRI, NHS Digital, and UK Biobank.

TRE (Trusted Research Environments)

HDR UK promotes and standardises Trusted Research Environments (TREs) as the secure infrastructure model for accessing sensitive NHS health data, aligning with EHDS secondary use frameworks and GA4GH data access standards. HDR UK does not own or operate TREs directly; it works in partnership with existing TREs across the four UK nations to develop shared tools, policies, and standards.

FAIR and Open Science Alignment

HDR UK implements FAIR principles across its programmes:

  • The Gateway catalogue uses DCAT-aligned metadata.
  • OMOP CDM is the recommended common data model for NHS research data.
  • HL7 FHIR is used for data exchange and EHR interoperability.
  • Open code and reproducible analysis practices are promoted through HDR UK hubs.
  • International alignment is maintained with EOSC, GA4GH, and RDA.

Connections

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