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Overview of NHS Digital Reference Data Registers
A data register is a central location in an organisation where metadata definitions are stored and maintained in a controlled method, including relationships with related metadata types.
Data Registers are used where data must be applied consistently within an organisation or across a group of organisations. The objective is to ensure uniform definitions of data across time, between data repositories, between organisations or between processes. A data register stores both semantic (relating to specific meaning) and representational data elements.
It is important to note that a data register should be seen as distinct from a disease register (or registry), which is a special database that contains information about people diagnosed with a specific type of disease.
Vision for NHS Digital reference data registers
The reference data provided in the registers supports operational needs such as messaging, activity reporting, electronic health records, access control and so on. If systems and processes are to interact in a standard way, they must hold a synchronised view of this reference data. The registers facilitate this by enabling all users to obtain the same data, from the same sources.
Currently, reference and metadata are sourced, maintained and published by a large range of disparate organisations, teams and departments spread across the system, using a range of different format and technologies. This makes obtaining and using this data cumbersome, time-consuming and inefficient.
The ultimate vision for The NHS Data Registers Service is to rationalise and consolidate the reference data ecosystem. It will provide all customers with a single trusted source for all the reference and metadata needed by the system, to be surfaced and applied consistently. Having this reference point allows clinicians, healthcare administrators and government bodies to apply consistent definitions which in turn provides a single and authoritative version of the truth. This in turn will enable the fast-tracking of interoperability between systems and processes across health and social care.
Most published data are underpinned by Data and Information Standards as defined in s250 of the Health and Social Care Act 2012, or other statistical standards (for example, Index of Multiple Deprivation). For a minority of data there remains no standard, for example mappings and groupings, although these have high utility across NHS organisations and government departments.
It is important to note that NHS Digital is not always the single source (or custodian) for the Data Registers it provides. NHS Digital acts on behalf of the custodian to ensure that key NHS reference data are managed effectively and published in (near-) real time, ensuring a high degree of trust across the health system. NHS Digital’s role, and the approach described, was endorsed by the Government Digital Service in early-2018.
Illustrative examples where authoritative registers have been used, as follows:
We use the GP List Size Register to calculate disease prevalence. We then use these data to monitor patterns at both national and local level. For example, we know that national (recorded) dementia prevalence for April 2018 was 0.765 per cent (or approximately 1 person in 131) and we can contrast this at local level to monitor diagnosis rates and associated pathways. Our disease prevalence data is used widely across the health system.
We use the Organisation Register to link GP practices to NHS sustainability and transformation partnerships (STPs). This helps us to group and publish data in real time and drill down using the latest NHS hierarchy.
When developing analysis on lifestyle and behavioural data we use the Population Registers to ensure consistent mapping between different geographical areas. This allows us to accurately reflect trends, patterns and any issues affecting equitable access to health services.
We use the Organisation Register to deliver interoperability between systems involved in NHS and social care business processes. A good example is the Child Protection Information Sharing initiative. The Register is used to deploy the IT systems involved, govern access and enable those systems to interact with the NHS Spine.
We use the ICD 10 Register to add descriptions to diagnosis and procedural codes – this may seem a small thing, but it allows for publications and reports to be more accessible and informative. We also use the Register to provide groupings of codes.
We use the Postcode Register and Indices of Deprivation Registers to map children measured as part of the National Child Measurement Programme to geographical areas and deprivation levels. This enables us to compare data, such as obesity prevalence between areas and investigate relationships or trends over time.
We use the Organisation Register and the NHS hierarchy also provided by this register is used within the e-RS system to manage Electronic Referral System bookings. The data regulates which bookings are presented to users and ensures that local services are represented in the way they need to be to deliver local needs.
We use the Organisation Register to identify cohorts of women for screening programme call and recall activity. We also use it to determine default screening boundaries.
We use Register data to manage smartcard access to NHS systems and also to enable inter-system messaging.
The NHS landscape is fragmented. The quality and use of data registers is inconsistent, presenting difficulties in bringing data together. There is also cost to NHS organisations who commission organisations such as UK Health Dimensions (UKHD) to fulfil this demand.
The joint Cabinet Office/Government Digital Service’s Government Transformation Strategy, published in February 2017, included four potential NHS data registers, such as clinical commissioning groups. Subsequent collaboration between NHS Digital and the Government Digital Service (GDS) has identified several more.
Work carried out by GDS and NHS Digital through the first half of 2018 has highlighted clear benefits for NHS Digital to act as the single intermediary custodian for all NHS Data Registers and this activity is proceeding at pace.
NHS Digital are working to an ambitious plan to deliver an external world-class NHS Data register service, drawing in best practice from across government departments.
The NHS Data Registers Service fits within NHS Digital’s National Data Architecture, which provides an overarching framework and set of principles for design and structure of data elements and standards.
The NHS Data Registers Service consists of approximately 400 specific registers. See a full inventory, instructions on how registers can be accessed and what new registers are due to be launched. The following table identifies groupings, as appropriate:
|Addresses Registers||Source: Ordnance Survey. Current properties including addresses sourced from local authorities, Ordnance Survey and Royal Mail, all provided with an UPRN (Unique Property Reference Number). It includes objects without postal addresses and live records captured by local authorities but not matched to Royal Mail PAF data.|
|Calendar Registers||Source: NHSD and Gov.uk. Calendar date dimensions, enabling the navigation of a fact table through dates, months and key dates such as public holidays.|
|NHS Data Dictionary Registers||Source: NHSD. Codes and associated descriptions from the NHS Data Model and Dictionary. The NHS Data Model and Dictionary provides a reference point for approved Information Standards Notices to support health care activities within the NHS in England. It has been developed for everyone who is actively involved in the collection of data and the management of information in the NHS.|
|Geography Registers||Source: ONS. Range of Geography codes, which contain the definitive list of UK statistical geography codes.|
|Healthcare Professional Registers||Source: GDC and GMC. Registration status of medical practitioners and dentists.|
|Healthcare Resource Group Registers||Source: NHSD. Healthcare Resource Groups listings and supporting lookup tables.|
|ICD Code Registers||Source: WHO and NHSD. International Classification of Diseases (ICD) 10.|
|Mapping Registers||Source: ONS, NHSD and NHSE. A range of mapping tables exist, enabling users to lookup a range of entities and key relationships.|
|Registered patient Registers||Source: NHSD. Breakdown of patients (aggregates) registered at a GP practice, by age and gender.|
|Population Estimate Registers||Source: Eurostat. National and Subnational Population estimates throughout the UK, incl. Age-standardised rates to the European Standard Population (ESP).|
|Postcode Registers||Source: NHSD. The NHS Postcode Directory (NHSPD), which relates both current and terminated postcodes in the United Kingdom to a range of current statutory administrative, electoral, health and other area geographies.|
|SNOMED CT Registers||Source: SNOMED International and NHSD. Range of SNOMED reference data tables to support analytical use.|
|OPCS Registers||Source: NHSD. Office of Population Censuses and Surveys (OPCS) reference data.|
|Statistical Data Registers||Source: DCLG. Includes Alcohol-Attributable Fractions (AAFs), calculated for England; and Indices of Deprivation measures relative levels of deprivation in small areas of England.|
|NHS Dataset-specific Registers||Source: NHSD. Dataset specific reference data, for example supporting data products such as HES, Primary Care, Social Care, Cancer Waiting Times and Lifestyles.|
New registers are introduced based on demand. The Service operates a function whereby new Data Registers can be requested by a current or potential customer. In response, NHS Digital typically investigate:
- whether there is a valid source
- whether the quality of data is robust (through a number of data profiling routines)
- whether there is a consistent and robust method of supply
- whether there will be ongoing utility (and benefit) to the health and care system
In this respect, new Data Registers are introduced on an ad hoc basis, but in line with requirements to support the NHS and to deliver patient care.
Plans for the future
As noted, the NHS Data Registers Service allows for a range of reference and metadata to be surfaced and applied consistently, whether there is a Standard, or otherwise. In this respect, the Service feeds off standardised specifications of health and care concepts, clinical classifications, and so forth.
Key future enhancements to the service, which NHS Digital seeks to progress are as follows:
Roadmap for delivery
Aligned to this, and enabled by this, the NHS Data Registers Service will deliver the following:
Within 12 months
Comprehensive inclusion of all Data and Information Standards, as covered under section 250 of the 2012 Health and Social Care Act.
Within 24 months
Comprehensive inclusion of all Cyber Security Standards used within the NHS, including design principles and specific baseline standards for common software.
Comprehensive inclusion of all Interoperability Standards used across the NHS.
Within 36 months
Comprehensive inclusion of all Design, Build and Quality Assurance (QA) Standards used within the NHS, incorporate aspects such as secure-by-design, required information on algorithms and authentication.
Comprehensive inclusion of all Commercial Standards used across the NHS, which would include various aspects dependent on the nature of the product and service and the framework.
Enablers, collaborations and dependencies
Introduction of the NHS Data Registers Service has so far been received positively. However, to realise true benefit NHS Digital anticipates a range of challenges, notably relating to wider application and take-up across health settings and government departments to increase consistency and utility of data.
On the one hand this can be addressed through targeted communication, but there remains the opportunity to consider the application of Standards across a wider number of Data Registers, as applicable.
There is also the challenge of keeping pace with rapid changes across healthcare, particularly in the field of life sciences. For example, the velocity of innovation relating to human reference genomics, naming genes and linkage proteins, protein sequences and annotations is significant. NHS Digital is well placed to support the agenda, but will need to consider how Standards could, or should, be applied and then mobilise at speed to surface these Standards in order avoid fragmentation and loss of consistency.