We have undertaken major work in the last year to uplift the Digital Maternity Record Standard to reflect improvements being made to models of maternity and perinatal care in line with the priorities outlined in NHS England’s three-year delivery plan for maternity and neonatal services.

Multiple recommendations from the Better Births Report (2016), East Kent Maternity Report (2022), Ockenden Report (2022) have been addressed in the standard. Our work will help to standardise information in electronic maternity records so that they are shareable between different IT systems and healthcare providers.

This was our largest ever consultation exercise covering groups with protected characteristics including 19 workshops with equality groups. We mapped our consultation activity to an Equality Impact Assessment ensuring that every target group had the opportunity to engage on the work in a way that was appropriate to them.

We partnered with groups such as LGBT Mummies, SignHealth for British Sign Language users, Blackpool family hub (around deprivation and impact on maternal care) and the Queen’s Nursing Institute inclusion specialists for engagement with homeless, refugee and Roma people to run 19 workshops on equality issues.

We also ran a series of webinars with over 500 attendees, including health and care professionals, users of maternity services and IT system suppliers, ensuring the standard addresses the needs and requirements of everyone who is providing and receiving maternity care.

The PRSB was commissioned by NHS England’s Data and Analytics team to support the development of a national Canonical Data Model (CDM), aimed at enabling innovative data use and increasing transparency.

The CDM defines how data, such as person demographics and health and care information, should be structured and coded to support secondary uses for operational management and reporting. It is designed to align with existing models for direct care, making data reuse easier and reducing reporting burdens on staff. Initial uses of the CDM include informing national reporting dataset specifications and supporting initiatives such as the Federated Data Platform (FDP), NHS England’s strategic solution for operational management.

The project had two phases. Phase one involved a peer review of the CDM and an evaluation against existing international and national information standards, data models, and NHS dataset specifications. This included a strategic assessment of alignment with models such as openEHR, PRSB models, relevant ISO standards, and FDP input specifications, plus high-level and detailed mappings for sufficiently defined models like OMOP and the theatre productivity dataset. An initial report of findings and high-level mappings was submitted in November 2024, with a supplementary report on detailed mappings in December 2024.

Phase two involved a consultation on whether the CDM met the needs of clinicians, professionals, the public, and data users. Two FDP use cases—Theatre scheduling and productivity reporting, and equipment and devices management—formed the focus of this consultation, which ran from April to July 2025.

The Diabetes Information Record Standard was first published in 2021. In 2024/25, further work was undertaken to develop exemplar templates (in collaboration with clinicians and system suppliers) to support the implementation of the standard.

The templates include:

• a “front sheet” for GPs, setting out the key information they need about a person with diabetes,
• a template for key data from diabetes monitoring and insulin administration devices, including Continuous Glucose Monitors, insulin pumps and Hybrid Closed Loop Systems, and
• a template for a school care plan.

To improve the coding of information related to diabetes management, PRSB worked with the NHS Business Services Authority to ensure that diabetes management devices were available in the NHS Dictionary of Medicines and Medical Devices.

During this period, PRSB also worked with two system suppliers and the Health Innovation Network on three pilot projects of the Diabetes Information Record Standard. One pilot tested the capture of patient-recorded data, such as blood pressure, alongside patient-generated data from activity monitors, and the ongoing sharing of this information with GPs. Another pilot in South-East London, led by the Health Innovation Network, focused on improving the sharing of information following a hospital diagnosis of gestational diabetes with the GP, as evidence shows these diagnoses are not always recorded correctly in GP systems, leading to gaps in appropriate follow-up.

The report of this pilot was published as part of the Diabetes Implementation Toolkit. In 2025/26, PRSB and NHS England will continue working with system suppliers and diabetes management device providers to improve the sharing of device data with clinicians. This will support local population-level risk stratification for people with Type 1 diabetes and ensure clinicians have access to the information they need at the point of care to advise people on managing their condition.

The Mental Health Services Data Set (MHSDS) provides consistent, patient-level information for people accessing mental health services. To improve data quality and clinical consistency, NHS England commissioned PRSB to develop SNOMED CT reference sets for community mental health teams. The first version was published in 2023, and this 2025 update builds on that work.

The reference sets cover non-urgent pathways for children, young people and adults, including therapeutic interventions, care planning, and one-off sessions. They support routine MHSDS submissions and waiting time reporting, without replacing broader clinical documentation.

The 2025 update expands and maintains these sets, adding new interventions for emerging roles, autism assessments, older adult care, and digitally enabled therapies. Clear definitions and use cases help teams record data consistently and accurately, while updates remain aligned with national guidance.

This work improves understanding of patient waits, reduces the data burden on clinical teams, supports integrated care, enables better audits and reporting, and helps monitor evidence-based therapies across services.

Visit the report page

PRSB is working with the Health Information and Quality Authority (HIQA) in Ireland throughout 2025 to provide specialist training and advice on setting and maintaining health information standards. This includes sharing proven methodologies, tools, and lessons learnt from our standards development in the UK, as well as guidance on clinical safety and governance.

The programme is designed to strengthen HIQA’s role in leading health information standards in Ireland and ensure these are consistent with national and international requirements. It also offers opportunities for shadowing and practical application of PRSB’s approach, giving HIQA teams hands-on experience of standards development and implementation.

Find out more about this project on our website.

The Epilepsy Information Standard is being developed to improve the consistency of care and information sharing for children, young people, and adults with epilepsy. In earlier phases, PRSB worked with clinicians, patients, and carers to complete discovery, user-centred design, and consultation on a draft standard. These stages identified the data items most important for care, audit, and research, and confirmed strong support for an approach that combines structured data with flexibility to reflect complex clinical needs.

Now in Phase 4, the project is focused on developing the final Epilepsy Information Standard. This includes embedding the model in PRSB’s Data Modelling Tool, defining clinical terminology using SNOMED CT, and engaging with system suppliers to test design and feasibility. The aim is to ensure the standard is practical, implementable, and ready to support safer, more integrated epilepsy care across all settings.

Find out more about this project on our website.

PRSB has been commissioned by the Obstetric Anaesthetists’ Association (OAA) to research and develop an information standard to enable the routine collection of data on anaesthesia administered in maternity settings (e.g. epidurals and other forms of pain relief).

Currently, some aspects of obstetric anaesthesia care are captured in Electronic Patient Records (EPRs), but this is often partial and inconsistent across IT systems. As a result, there is limited national data available to understand variations in quality and outcomes.

A national project to review obstetric anaesthesia records was halted in 2016 due to the high overheads and complexity of manual data collection and analysis. PRSB’s work is therefore centred on identifying the minimum requirements for recording obstetric anaesthesia in IT systems, how this data should be structured, and how it can be made available for safe care and audit purposes.

Following a discovery phase in early 2024, PRSB carried out consultation on the draft standard in early 2025. This phase is now complete, and we are preparing the final report and standard documentation, which will be published at the end of 2025.

Our latest project explores how child safeguarding information is recorded and shared within healthcare, with the goal of improving the identification and protection of children at risk. The findings will inform recommendations for information requirements and potential standards to support safer, more accurate, and timely safeguarding practices across health services.

Safeguarding is guided by law and national standards, which define the responsibilities of organisations and professionals to protect children from harm. Reviews and stakeholder feedback have shown that there is no single, consistent set of information recorded and shared across health partners. Without a standardised approach, vital details can be missed, putting children at risk. The work focuses on identifying the key safeguarding information that needs to be captured and shared, where it should be recorded, and how health systems can better support professionals in fulfilling their statutory duties.

Covering children from pre-birth to age 18, the project also considers issues around the transition to adult services and links to adult safeguarding. While focused on England, engagement across the four nations helps to understand cross-border challenges and align with related programmes. This discovery work has been commissioned by the Department of Health and Social Care to ensure that recommendations are grounded in evidence and aligned with national priorities. By combining evidence, professional insight, and system analysis, it lays the foundation for future safeguarding standards that enable safe, effective care for children and young people.