Notice
- Important: This guidance is under active development by NHS England and content may be added or updated on a regular basis.
- This Implementation Guide is currently in Draft and SHOULD NOT be used for development or active implementation without express direction from the NHS England Genomics Unit.
Background
The Unified Genomic Record (UGR) is a key technological component designed to unify patient genomic data into a single, patient-centric record. The UGR is intended to standardise the collection, storage, and sharing of genomic data across the NHS, ensuring that genomic information is interoperable and accessible across all care settings.
The UGR architecture is structured into three key layers:
- End User Functionality – Integrating with existing NHS services to facilitate direct interaction with the UGR
- Interoperability – Serving as the primary gateway for accessing and sharing genomic data across different healthcare systems.
- Data Storage – Implementing a hybrid centralised and federated data storage model, leveraging the Patient Data Manager (PDM) as the central data entry point.
The key problems the UGR aims to address in support of delivering the Genomic Medicine Service are:
- Fragmented and Inconsistent Genomic Data Management, by bringing the genomic data into a single genomic record framework and enforcing UK Core FHIR interoperability standards. Access is centralised through APIM and MNS. Centralising genomic data access will help promote standards adoption by suppliers.
- Limited Reusability of Genomic Test Reports, by bringing the genomic data into a single genomic record framework and enforcing GA4GH and UK Core FHIR interoperability standards.
- Inefficient Data Use for Research and Population Health, by providing a centralised unified point of access for genomic data that is readily available for population health, management information and research, reducing the burden on GLHs and enabling more robust data analysis and insights.
- Limited Integration of Genomic Data with Clinical Pathways, by decoupling genomic data from the systems involved with the originating test request and making available for any other provider with other clinical data, enabling more comprehensive patient management and facilitating the use of precision medicine across the NHS.
- High Administrative Burden and Operational Inefficiencies, through use of the genomic order management service. Adoption of standards and a unified point of data access will significantly reduce administrative workloads and improving the overall efficiency of genomic services.
- Inadequate Data Linkage for Inherited and Rare Diseases, by providing a simple mechanism for securely linking genomic records, respecting patient preferences, and enabling the implementation of targeted, family-based care strategies.
- Lack of Centralised System for Identifying Clinical Trial Eligibility, by potentially serving as a centralised virtual repository that enables researchers to identify eligible patient cohorts, enhancing patient access to innovative therapies and supporting the growth of clinical research.
- Absence of a centralised access control, by providing an opportunity to streamline access control processes, allowing patient-based policies instead of organisation or system-based policies. With the data decoupled from end-user systems, enforcement of policies at source is assured and includes comprehensive audit and transparency for patients improving confidence and trust.
- Inconsistent Access to Pharmacogenomic (PGx) Data Across NHS, by providing the master PGx record for patients and making the data available nationally to any clinical decision support system involved in prescribing.
- Inability to Provide Comprehensive Patient Access and Transparency, by centralising access to the genomic record via the APIM. This significantly simplifies the integration of the UGR with the NHS App.