Data Systems for High-Risk Individuals

4.1 The Welsh Government recognises the importance of ensuring that health data and digital systems can quickly and accurately identify people who may be at higher risk of serious illness or death during a future pandemic. However, we also acknowledge that without knowing the exact nature of any future health emergency or pandemic, it is impossible to determine that data systems will identify all those at high risk in all circumstances. 4.2 The Welsh Government is working to improve digital systems across the NHS in Wales. This includes better links between primary and secondary care, more consistent patient records, and safer ways to share information across health services. Work has started on a refreshed Digital and Data Strategy for health and care in Wales. This will set out long‑term direction for improving digital services and making better use of data. The work will be phased and carefully prioritised within available resources. 4.3 The Welsh Government is also working to improve how health data can be shared safely and used appropriately. A Data Use and Sharing Group, has been set up to look at where better data sharing could support patient care and public health. This includes identifying people who may be at higher risk during a public health emergency or pandemic and improving links between health and social care data. This group will make recommendations as to policy and legislative areas to support improved data sharing. 4.4 Work is already underway to make health records more detailed and consistent across Wales. By adopting National Clinical Coding Standards — ‘Once for Wales’ data consistency, Wales has established standardised coding standards across all care settings. This means patient records can capture diagnoses and risk factors more consistently, helping clinicians and public health teams identify people who may be at higher risk. 4.5 The Welsh Government is taking forward work to ensure that the legal framework for information sharing supports safe, effective and joined‑up patient care. This includes reviewing current arrangements and our legislative position, learning from developments elsewhere in the UK and working with the UK Government on issues of shared interest. Any future approach must maintain appropriate safeguards for patient confidentiality while providing services with clear legal frameworks for sharing information where necessary and appropriate. 4.6 We will provide a more detailed update on this recommendation in May 2027 once work on the Digital and Data Strategy for health and care in Wales has had time to progress.

The Scottish Government accepts this recommendation.

A number of actions are underway, or have already been completed, that have and will help to make progress towards the outcomes sought. Many of these actions are set out in the Scottish Government’s Data Strategy for Health and Social Care, and progress updates for Data Strategy for Health and Social Care 2024 Update: Our progress and priorities and Data Strategy for Health and Social Care 2025 Update: Our progress and priorities. These include: Data Strategy for Health and Social Care 2025 Update: Our progress and priorities

Capability to identify individuals at high risk

As part of our earlier response to the UK Inquiry Module 1 report, the Scottish Government has now developed an Analytical Framework to support planning, preparedness and the coordination of cross-government analytical work during a future pandemic. It is now an operational working document.

Improving patient data by enabling more granular diagnostic coding

The Scottish Government recognises the importance of improving patient data by enabling more granular diagnostic coding and is doing so by implementing new diagnostic coding standards:

Implementation of terminology standards (such as SNOMED CT) and classification standards such as (ICD 10/11) will be critical in achieving this. Scotland already has a major programme of work underway to deliver the SNOMED CT standard across health settings. This will support greater granularity and standardised recording of diagnoses, treatment and symptoms

Similarly, the UK Government committed the UK to the adoption of the International Classification of Diseases 11 (ICD 11). Adoption of this standard will modernise the collection of structured data that records episodes of care for statistical and epidemiological purposes. At present there is no formal programme to support the adoption of ICD 11 in Scotland, however it is expected this will be examined through business case development in the next financial year. In addition, a new data standards team has been established on a trial basis in PSD Scotland to help improve the quality and consistency of the adoption of standards including those relevant to diagnostic coding

As the Inquiry’s report notes, the Care Reform (Scotland) Act 2025 introduced the power for Scottish Ministers to set out legally binding Information Standards – for the first time, creating a legislative basis for consistent collection, use and compliance with information standards. This is key to improving the quality, consistency and interoperability of patient data for use in future pandemics.

Although this is not related to diagnostic coding, the Scottish Government, along with Public Health Scotland, has also been consulting on how to improve the collection of race and ethnicity data. A critical part of this is the agreement to add this information to the Community Health Index and identifying the best sources to ensure that decisions are based on high-quality data. Discussion on the important detail of implementing this change is ongoing.

Compatibility of records across primary and secondary care

The Scottish Government recognises the importance of ensuring health and care professionals can access the right information at the right time regardless of organisational boundaries. Presently in Scotland the Emergency Care Summary is accessible across primary and secondary care enabling information such as an individual’s allergies and prescriptions to be shared across primary and secondary care settings. Additionally, MyCare.scot is now available nationally across Scotland enabling individuals to securely access information in relation to allergies, prescriptions and vaccinations. It also allows them to share this information with those involved in delivering their care.

In the majority of areas in Scotland, this is further supplemented by the use of clinical portals which enable clinicians to view patients’ information across primary, secondary, community and NHS Health Board boundaries. However, access to clinical portals is not nationally consistent.

Looking forward, we intend to deliver a nationally consistent health and care record for an individual, through which the right information can be accessed by the right people at the right time. In doing so this will meet the duty placed on Scottish Ministers in the Care Reform (Scotland) Act. A nationally consistent record will be key to supporting those delivering care to have a better understanding of a patient’s health and care needs, supporting better informed decision making and co-ordination of care to improve outcomes for people during a future pandemic.

Secure data sharing and linkage for identification

Since the pandemic Scotland has strengthened its capabilities for data sharing and linkage, for example through the expansion of the National Digital Platform which provides access to patient data. Furthermore, Scotland has delivered the Seer 2 platform, a national technology capability for data management and analytics. This allows users to access capacity and tooling which can be deployed rapidly, to enable new datasets to be brought together. It enables data from many sources and across sectors to be integrated. Together, this technology capability combined with the Analytic Framework for future pandemics provides the foundation for rapid sharing and linking of data for identification during future health emergencies.

In addition to the above, the Improvement Service has established a dedicated team for the adoption of the Scalable Approach to Vulnerability Via Interoperability (SAVVI) framework, which could provide insight on the social determinants of health, outside of clinical determinations.

The Scottish Government continues to engage with the UK Government and devolved nations through a number of forums on matters pertaining to improving data sharing such as the Four Nations Digital Leadership Forum, Health Level Seven® International, Fast Healthcare Interoperability Resources Board (HL7 UK FHIR Board), UK Classifications Technical Advisory Committee and the Four Nations Patient and Public Involvement and Engagement Group.

The government agrees with the Inquiry that data systems need to be improved to identify individuals at high risk during a pandemic. The government’s 10 Year Health Plan and existing data policy work provide a strong foundation to achieve this.

No statement on delivery from Department of Health and Social Care has been found in the sources searched. This is separate from the response above.